Not sure about my celiac diagnosis

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Catrena R
New Member


Date Joined Sep 2012
Total Posts : 15
   Posted 9/10/2012 2:30 AM (GMT -6)   
Hey guys, I'm new here. I have been trying to figure out what is going on with me and I need some advice.

According to my birth records, I was on soy formula, and I spit up constantly as a baby. I was never put on any medications because unfortunately, my parents do not believe in doctors or medications.

I have had issues with reflux my entire life. I did not know what was wrong with me, I just ignored it. When I was around 5 years old, I started to develop problems with constipation and stomach cramps. I had a horrible diet to be honest, and I barely drank any fluids what so ever so the constipation part isn't too alarming.
I got stomach cramps constantly when I was a kid. Nothing really triggered them, it was random things. Sometimes it was a piece of candy, sometimes it was a milkshake. Sometimes it was god knows what. I don't have any known triggers to my stomach cramps.

As I grew older, I started having to use fiber power and dulcolax to keep myself regular. Any amount of water did nothing for my constipation. Nothing helped except that mixture.

I never had any growth issues, but when I was 18, I was told I had anemia. I've had it ever since.

Still to this day, anything could trigger my stomach cramps. If I were to sit down and drink a glass of milk, I would barf...but, on occasion, I can eat ice cream or yogurt...other times I couldn't. It is so confusing. I am now down to eating ramen and alfredo lean cuisines...

My doctor told me that she thinks I have celiac disease. Except...I don't get stomach cramps when I eat wheat...frankly, my stomach cramps are so ridiculous and all over the place that I don't know what triggers them. For example, when I was a child, I could eat McDonald's chicken nuggets but I could not eat store brand chicken nuggets. I cannot eat store brand pizzas. Something in the dough causes problems...but I have been able to eat delivery pizza.

I've been looking into gluten free, and to be honest, all food makes me nauseated at this point...no matter what it is. I get indigestion and nausea from anything. I have tried some of the gluten free products. I know it takes awhile to get the gluten out of my system but can I really have celiac disease if I don't have obvious stomach cramps after I eat gluten?

I was looking over the celiac disease symptoms on google, and the most obvious symptoms I have off the list are the stomach cramps, indigestion, gas, anemia, and I also have had teeth problems my entire life. My teeth rot very easily even though I take care of them. I've had two molars pulled due to rotting. My wisdom teeth have all developed holes in them and rotted to the core of the tooth. I take care of my teeth...I don't eat a lot of sugar. I've also always had issues with fatigue, and muscle pain.
I just don't know if I can actually have celiac disease if I don't actually have any triggers...my stomach cramps are so random.

Thanks for any advice.

mrsbugzy
Veteran Member


Date Joined May 2012
Total Posts : 641
   Posted 9/10/2012 6:19 AM (GMT -6)   
There are so many other symptoms.. it may not be celiac, but merely a gluten intolerance.
Other common symptoms include, migraines, runny nose, rash, ulcers or cold sores in mouth, a general run-down flu type feeling.. this can all be part of it. Or getting really red in the face and "hot" flash feeling after eating gluten. A lot of celiacs are also lactose intolerant..
So, if I were you, I would
1~ get blood test for celiac
2~see an allergy specialist
3~see a gastroenterologist
And if you want to check for gluten sensitivity, remember, you can not start a gluten free diet and then have your bloodwork done! So many people start a gluten free diet,then try to get blood work for celiac, and it doesn't work that way. you have to be eating gluten to see if you are sensitive to it.
So, ask your doc for the blood work, and make sure you get a good list of what you can and can't eat to see if it is a sensitivity issue.
Of course, these are just suggestions, but I have had to be gluten free for 9 years now, and my doc told me "your blood work came back negative for celiac, and trying to be gluten free is a noble effort, but I don't think you can do it."
Only to find out I have a gluten sensitivity. BADLY , if I eat anything that is even slightly cross contaminated, I get cold sores, migraines, and constipation. It has landed me in the hospital more than once over the last 9 years.
Good luck! I would be interested to see how this all works out for you :)
Celiac
total colectomy with ileo rectal anastomosis 1/12

Catrena R
New Member


Date Joined Sep 2012
Total Posts : 15
   Posted 9/10/2012 2:23 PM (GMT -6)   
Thank you, I appreciate the response but I don't have any obvious symptoms when I eat gluten. Like I mentioned before, I don't have any obvious trigger foods. One day I can have dairy creamer in my coffee the next day...I'll get nauseated and stomach cramps if I go anywhere near dairy.
The issue is, I have hyperthyroidism and the hot flashes/flush thing, I have that in general. Also, the general run down flu symptoms I have had since I was diagnosed with my thyroid condition. I have no idea if it's linked to celiac/gluten sensitivity. My thyroid condition has nothing to do with the GI thing, I actually developed it after I had heart failure in case you were wondering. I know I saw thyroid problems on the list.

Another thing I forgot to mention is...I have to eat, constantly. My stomach constantly has the hunger burn. When I say constantly, I mean...within 30 minutes after eating, even a big meal. The hunger isn't mild either, it end up getting hypoglycemia type of symptoms if I don't eat. I eat, and eat, but I also gain weight so it's obviously going somewhere. My stomach is really bloated and sore when I push on it too. My entire abdomen is sore to the touch. I have a really hard time losing weight, especially in the stomach area. I have a pot belly, but, I can kind of feel my intestines instead of a lot of fat. It feels like my intestines are pushing out of my stomach.

I am looking into the GI doctors, but at the moment, I'm broke and have 5 other conditions I'm having looked at. That's one of the reasons I'm here.
I keep trying to eat gluten free but honestly, the gluten free products make my stomach hurt worse than regular food...so I dunno. Maybe it's just because I haven't eaten the products before. New food is usually a big trigger for me.
My body needs to make up it's mind.

Missy_Liss
New Member


Date Joined Sep 2012
Total Posts : 2
   Posted 9/10/2012 7:02 PM (GMT -6)   
Hi Catrena,

You can by atypical (not show any symptoms) and have celiac disease (unfortunately!). Also thyroid disease is linked with celiac disease as are issues with lactose.

Also, have you been treated for intestinal worms lately? I'm celiac and was having huge issues last week with my stomach, having to eat constantly etc and then figured out maybe it was worms. Popped a pill (they are available over the counter where I live) and problem solved (at least on that front). They are so easy to pickup it's not funny, yet everyone thinks they are this really bad omg you dirty person kinda thing. So you could try that also.

If you are eating gluten, go to your GP for a blood test - that is used as a screening tool and is less expensive and invasive.

You sound like you have celiac disease which is causing the host of other problems you are experiencing. In some people they end up not being able to eat anything because of the damage in their intestines.

If I were you, I'd pop the pill for worms (if you have a small child blame them or invent one to blame haha), and then get the blood test done and then see where you are at.

p.s. I have celiac disease and work for a celiac support organisation (though not in the US).

Catrena R
New Member


Date Joined Sep 2012
Total Posts : 15
   Posted 9/10/2012 8:28 PM (GMT -6)   
I've never been treated for worms, ever. I don't even know how I would get them. I barely eat any meat, although I have no idea if that's how you get them but seeing as how I've had this issue since I was a teenager, I have considered worms. The issue being the constant hunger.
I see my GP tomorrow and I'll ask for the blood test. Thank you :)

Missy_Liss
New Member


Date Joined Sep 2012
Total Posts : 2
   Posted 9/10/2012 11:18 PM (GMT -6)   
Hi Caterna,

Kids carry them like you wouldn't believe. I can't remember how they get them but kids often carry them as they are always sticking their fingers somewhere and sucking them and then putting their fingers on stuff which you touch etc etc etc.

My sister is 9, (I'm 26 for the record) and the number of times we've treated ourselves is ridiculous. Some people are more suspectible I think, and it can make you feel awful. It would explain the constant hunger and the distended stomach etc. It won't hurt you if you don't have them either - so win win really :)

Maybe ask your GP about it tomorrow - you could have picked them up from someone not washing their hands and preparing food or anywhere really.

Let us know how you got on :)

Catrena R
New Member


Date Joined Sep 2012
Total Posts : 15
   Posted 9/11/2012 12:08 AM (GMT -6)   
I don't have children, but I didn't think of people preparing food. I have eaten out a few times in the last few weeks.
Thanks! :) I've written it down on my paper and I'll update as soon as I can.

mg12061
Regular Member


Date Joined Jan 2012
Total Posts : 36
   Posted 9/11/2012 7:23 AM (GMT -6)   
   Your symptomes sound a lot like my daughter's. She was diagnosed almost 2 years ago at 15 yrs old. She had constipation and daily belly pain. She was also always hungry and always tired. The blood test showed celiac and she then had a colonoscopy to confirm it. Some of her symptoms were aleviated by the Gluten Free diet but it has to be %100 gluten free which is difficult but certainly possible. Even small amounts from cross contamination can make a person with celiac ill. like if someone used a jar of mayonaise with a knife that has bread crumbs on it and then you use it. If you can do the blood test be sure to NOT eat gluten free until the test is done. It could cause a false negative test. Some of her symptomes were caused by a later diagnosis of Crohn's and a intestinal motility disorder also. A lot of her pain was diagnosed as nerve pain(from nerve damage in ehr intestines) which we're managing with medication. Since the blood test is fairly easy it may help to start there and either eliminate it or confirm it. One other things is a lot of people with Celiac also have a dairy intolerance.
Mary G.

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8382
   Posted 9/11/2012 9:42 AM (GMT -6)   
Catrena, it sounds like you are trying to self-diagnose based on a fuzzy history of stomach issues. Please go see a gastroenterologist and approach your concerns methodically. There are tests that can be done to eliminate or confirm a variety of diagnoses. You do not have a celiac diagnosis and maybe you never will. The people on this forum cannot diagnose you.
*******************
50 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day)Colazal (96 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed. Gluten free as of 5/30/11. Colonoscopy found no evidence of inflammation on 8/16/12.

Catrena R
New Member


Date Joined Sep 2012
Total Posts : 15
   Posted 9/11/2012 12:48 PM (GMT -6)   
I'm not trying to self diagnose. My doctor told me I had celiac disease and told me to go on a gluten free diet but she didn't tell me to do any blood work. I'm trying to figure out if it's possible to actually have celiac if I don't have any obvious symptoms when I eat gluten...but random things cause stomach cramps, doesn't matter what is in it.

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8382
   Posted 9/11/2012 2:32 PM (GMT -6)   
Your doctor cannot diagnose celiac disease without a biopsy of the upper gi tract. In your original post you wrote that "My doctor told me that she thinks I have celiac disease." That is not the same as a diagnosis.
*******************
50 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day)Colazal (96 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed. Gluten free as of 5/30/11. Colonoscopy found no evidence of inflammation on 8/16/12.

Melissfw
New Member


Date Joined Sep 2012
Total Posts : 3
   Posted 9/12/2012 3:00 AM (GMT -6)   
I am not a doctor but your symptoms are similar to mine and I was in denial about going gluten free for such a longtime. I finally took the plunge and I feel better than I ever have. I am 33 years old, got mono/ebv for the third time which apparently is very rare. I was finally over that but I felt dizzy all the time, would have trouble breathing sometimes, would all the sudden start sweating for no apparent reason, sometimes I would get fevers in the middle of the day, I was always hungry, would crave gluten, was tired all the time, my bones ached, I could go on and on. I went to a hundred different doctors and no one could figure out what was wrong with me. I had an MRI and they found lesions in my brain and they weren't sure what it was. My mom is intolerant to gluten and has tried to get me to go gluten free for years. Finally she took me to a cranial sacral therapist who convinced me to try a gluten free diet. I also got tested for an intolerance through a company called enterolab. They test using stool and it is said they can find an intolerance earlier than the blood tests. Additionally, I got genetic testing and it came back positive for both the intolerance gene and the celiac gene. I am convinced I have celiac but that is another story. You need to stop eating anything and everything that has gluten in it. It will take your body a long time to completely heal from it and you just have to have patience. They say you should try the diet for at least three months, bitnsupposidly it will take up to two years before your gut repairs itself. I found out I am also intolerant to dairy, soy and eggs so I also stay away from those items. You don't need to eat items labeled gluten free. You can do just fine eating regular fruits, vegetables and proteins from the store. There are so many resources out there to help you be gluten free. Like mg...said, you have to completely stay away from any and all gluten which means educating yourself, reading labels, asking questions when you go to restaurants etc. I think going gluten free for t least three months is a much easier choice than taking medicines or getting sicker. Of course you need to see a doctor, but you don't need a celiac diagnosis to try this. You might actually feel better. I have been doing this diet since July 11, 2012. It is night and day the difference in how I feel. Even the neurologist was shocked.

caligirl2001
Regular Member


Date Joined Jan 2010
Total Posts : 197
   Posted 9/18/2012 11:10 AM (GMT -6)   
First, I'm sorry you have had to deal with these issues for your entire life. I would recommend that you get tested to rule out/in Celiac for sure. Even if the test is negative, it does not mean that you do not have gluten sensitivity which would require the same treatment. I have a friend with diagnosed celiac who does not follow the diet. (I have given up trying to get her to do so) If she makes herself a sandwich at home with store bought bread, she vomits. But eating a sandwich at a deli, she does not have the same reaction. Some corn chips with wheat in them settle her stomach, but other things instantly make her sick, which is why I can't get her to take it seriously - inconsistent reactions. I was similar prior to my diagnosis. A single bite of pasta would instantly make me sick, but having something like a chicken sandwich would cause delayed reaction or even make me feel better for a time. (I assume the protein slowed down the digestion). Now, even a slight cross contamination produces instant reaction.

I also have other food intolerances: dairy (casein-not just lactose), soy, corn, grapeseed. These didn't become apparent until gluten was out of my system and I could feel symptoms from eating them. I had reduced myself to baked potatoes with butter, and was still in pain. Go figure, turned out the butter on my potato was making me sick and I was eating it twice a day and losing weight like crazy because I was too sick to eat anything else. I also have fructose malabsorption. This was diagnosed after a long time of everything I ate making me sick ( with being GF,DF,SF naturally I ate tons of fruits and veggies and was in serious pain and still sick - again making myself sick with "healthy food"), so I can relate to that feeling. I am also FODMAP sensitive. I deal with constipation as well. Miralax is my go to solution if I go too many days.

Food intolerance can be subject to quantity (load) which can explain why you can have a little one time, but get sick other time. A little butter might be okay, but have butter and a glass of milk, and sour cream on your baked potato and you could have a problem.

I would recommend cutting all dairy and if you can, request the celiac testing if your doctor suspects celiac. If she really thinks you are celiac, they should be willing to do the tests. But even with your inconsistent reactions, it is certainly possible. Even if it is negative, your food issues are real and gluten sensitivity is possible without celiac. There are also many other possible causes to be explored. It took an immunologist to find my fructose malabsorption when my traditional doctor had just shrugged at all the pain I was in.

dawn milton
New Member


Date Joined Sep 2013
Total Posts : 2
   Posted 9/4/2013 2:45 PM (GMT -6)   
I was diagnosed with celiac disease less than a year ago by a gastroenterologist with a colonoscopy, endoscopy and blood test.
Sometimes I eat foods that don't have "gluten free" (but I don't see any ingredients such as wheat, rye or barley listed on the package label). So I try to stay on a gluten free diet. Sometimes I think just eating makes me feel sick, no matter if it is labeled gluten free or not. Any ideas on what might be going on? I am planning on getting a book online that identifies 45,000 grocery store items that are gluten free. Right now it is really frustrating to figure out what to eat or to find gluten free foods (very few are labeled gluten free in the grocery store. Thanks for any ideas or suggestions you have.

dawn milton
New Member


Date Joined Sep 2013
Total Posts : 2
   Posted 9/4/2013 3:05 PM (GMT -6)   
I agree with Caligirl that quantity may have something to do with feeling bad after  a meal.  I really need will power to cut down to very small meals but I confess I get really hungry at meal times so it is difficult to cut down.  However, remembering Caligirl's suggestions, I will make a greater effort.
 
With regard to the other posters, on fruit and non-gluten items that affect you adversely, how do you find food enough to eat?  Also, reference lactose intolerance, milk apparently has more protein than most substitutes...example, rice milk only 1 gram protein per 8 oz verus dairy milk 8 grams protein.  (I don't eat a lot of meat sometimes and therefore don't get but about 15 grams of protein a day which is not enough.)  These digestive problems are so puzzling. I think I only feel good about 50% of the time. 

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8382
   Posted 9/4/2013 3:15 PM (GMT -6)   
If you are just starting to follow a gluten free diet, it is important to take this really seriously. I would suggest that you just avoid processed foods completely, unless they are marked GF. I'm sorry, I know how challenging that is, but I think it is simply impossible to know what's in a processed food item with any kind of confidence in the absence of proper labelling.

Of course, it is possible that you have other intolerances, and you can explore that most effectively by keeping a food journal.

Fifteen grams of protein is not enough, not by a long shot. You may have to incorporate animal proteins in your diet if other sources aren't tolerable. Why not eat some white fish like tilapia? It is easy to tolerate. What about tofu? Egg whites?
*******************
50 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day)generic Colazal (96 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), psyllium (1/2T daily), mesalamine enema as needed. Gluten free as of 5/30/11. Colonoscopy found no evidence of inflammation on 8/16/1

frazere
New Member


Date Joined Oct 2013
Total Posts : 1
   Posted 10/20/2013 12:53 PM (GMT -6)   
In reading the replies to the original question I am struck by several things: treating MD's diagnostic prowess as good when in fact the ability of MD's to diagnose Celiac Disease is horrible; generally ignoring the hyperthyroid condition that seems obvious; and the consistent overuse of meds that can contribute or in fact be the cause of all/most symptoms.
I have been diagnosed for over 26 years and what I have found is that newly diagnosed Celiacs are among the worst at giving advice about the condition. That is not to say that ALL long term celiacs have answers but the chances become better with long term
Celiacs that continue to research and find practical work-arounds in day to day living.
Wheat/gluten is rather recent as an addition to the human diet and as such should be considered questionable as a useful human food. That MD's should be given gatekeeper status as diagnosticians for CD is stupid ~ their formal education in the area is less than one day as is their education in diet. Remember that Big Pharma runs the game and there is no upside to telling a patient that they need to be on a Gluten Free diet ~ FOREVER. No, a diagnosis of IBS or Croen's Disease or some other Gluten induced problem will be treated with drugs and surgery which keeps the patient coming back for more of Big Pharma's stuff. The very idea that one would eat a dangerous diet to confirm what is self-evident is beyond stupid ~ but MD's do it all the time.
After going to an MD with specific complaints the AVERAGE time to diagnosis is 12 Years, and this is for a condition that is now recognized as having a prevalence of >1% of the population.
No, take the MD's out of the loop ~ they offer nothing and can be a source of terrible mis-diagnosis.

Post Edited (frazere) : 10/20/2013 1:08:58 PM (GMT-6)


Intmalrotation
New Member


Date Joined Aug 2014
Total Posts : 1
   Posted 8/1/2014 8:10 AM (GMT -6)   
Pay close attention to this - your age tells me that you need to request an upper barium x-ray from your doctors to rule out Intestinal Malrotation. Doctors don't automatically test for this in populations in their 40's & 50's as they believe you should already be dead from this and then they would just find this defect on your autopsy report. No thanks. Disgustingly sad because it is presumptuous, lazy and avoidable.

Intestinal Malrotation is a congenital birth defect (you can't cause it) that can be profoundly unique in each person - sometimes very obvious and then for some it is 'just a little twist' of the intestine... this can only be fixed with abdominal surgery called the Ladds Procedure, perfected in the 1800's. You might be a surgical patient - NOT a medical patient. I suffered your symptoms for 52 years with doctors blaming me for it all (anorexic, false celiac, bulimic, poor diet, attention seeker, nut-case) until an Interventional Radiologist found my Intestinal Malrotation on a 10 year old x-ray, it changed my life. Find a good surgeon who has a 100% track record with Ladds Procedure for adults. If you have this birth defect, as you age, your body is less able to cope and recover from the painful twisting intestine, it will kill you. In can twist numerous times a day causing different symptoms. Don't ask, just say to your doctor: " I need this possibility reviewed and taken off my check list of possible diagnosis." DON'T QUIT UNTIL THEY SPECIFICALLY REVIEW AN X-RAY AND TELL YOU - NO, YOU DO NOT HAVE THIS IN THE LEAST BIT. In America, doctors are not trained to respect this diagnosis in adults - we are suffering entire lives of unexplainable excruciating pain because we had the audacity to keep living through it. Also, Intestinal Malrotation can cause something called 'deferred pain' which means where you 'feel' the pain isn't where the pain is necessarily or actually radiating from - it confuses you and the doctors. When the doctor's would say: "Point to your pain." I was pointing 5" away from the intestinal defect because the nerve for that area was also defectively misplaced - we are not always born perfectly formed. Is any part of your body formed out of sorts... like scoliosis, deviated septum, for women/tilted uterus - if yes - always look for unexplainable pain to be possibly coming from something similar - like Intestinal Malrotation. In Europe, they look for this first in a suffering abdominal patient... in Greece you know first thing. Here you go: http://www.ajronline.org/doi/full/10.2214/ajr.179.6.1791429 AND ALSO http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3015603/
Promise me you will ASK.
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