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Do my symptoms sound like gluten intolerance?

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Posted 10/24/2013 5:23 PM (GMT -6)
Hi, I'm new.  I am finding conflicting info on what symptoms constitute a gluten sensitivity/intolerance.  I have some of the symptoms, but not all.  Would like input from those who have this so I can compare to my symptoms.  

For example, I don't have skin issues, diarrhea, or fatigue, and although my doctor didn't specifically test for anemia, he feels I don't have that.  I read those are symptoms of celiac issues and/or gluten intolerance.  BUT, I do have almost constant upper abdominal pain and pressure (center and left side), throat pain/pressure and spasms, gas, gurgling, bloating, reflux, indigestion, and then nausea quite frequently.  Usually the pain and gurgling symptoms are worse in the morning when my stomach has been empty for several hours, but not always the case. 

So far, I haven't noticed any relationship to WHAT I eat and symptoms.  Sometimes I feel worse when I eat, other times it relieves symptoms a lot almost instantly.  So weird!  Keep in mind, I haven't lasted more than 2 days on a gluten free diet, so that has yet to be accomplished for testing reasons, lol. 

I have no answers from the doctors yet except "reflux" or indigestion.  Definitely have had reflux for many years, so that diagnosis is no surprise.  But I'm getting worse and have new symptoms (listed above).

Already been checked for cardiac issue which is negative.  Ultrasound of abdomen was negative.  CT scan was negative.  No evidence of gallstones or liver issues.  No endoscopy has been done YET.

So, does any of this ring a bell with those of you who are diagnosed?  Can I have gluten intolerance without the rashes, anemia, fatigue, loose bowels, etc? 

By the way, I do have allergies in general, asthma, and hypoglycemia if that helps with ideas. 

Thanks so much!  Getting help from doctors is like pulling teeth so I'm hoping I get good info here. :-)

 

Posted 10/24/2013 8:25 PM (GMT -6)
Well you can have Celiac and not have any issues. I had a few issues like gas, bloating, acid reflux, pain in lower abdomen , rash, sores in mouth , hair falling out, diarrhea, fatigue, toe nails falling off. It doesn't mean everyone will have the same issues. It is such a wide range of things so it is hard to nail down. Have you been tested for Celiac? Or have you tried to go on a Gluten Free diet for any amount of time? I am Dx'd with Celiac for 4 months and still have Acid reflux. My rash is going away and my hair is not falling out any longer , Toe nails still an issue and I still have Acid reflux. It is such a hard thing for Dr's to nail down. You need to be eating Gluten for weeks to be properly Dx'd also ..

Yes you can have Gluten intolerance without the rash, anemia, fatigue, loose bowels, ect. I hope you find the answer to your problems.
Posted 10/24/2013 8:51 PM (GMT -6)
Thanks for your info. I guess I have to go back to the GI doctor and insist he run tests on me to really get to the root cause. I also have tried the GF diet before but didn't commit to it long enough at all. I will try for real this time! I know it can take a long time to see results. I will be sure to tell the doc exactly what I am doing, just in case it might affect test results.

I am finding out now that symptoms vary wildly between people for this same condition. I wouldn't have guessed that but it sure is the case.
Posted 10/25/2013 7:18 AM (GMT -6)
You can avoid spending money on more testing and doctor's visits by just committing to a true GF diet for 3 weeks. It's not that hard to do and you can be your own judge of how things feel after 3 weeks are done.

Testing for anemia, by the way, is quite simple and it's just ridiculous that your DR hasn't done that.

Your symptoms sound mostly like GERD. Have you tried taking a ppi? Have you been testing for h. pylori? Have you had a swallow study done?
Posted 10/25/2013 8:13 AM (GMT -6)
I have used ppi many times over the years with little to no improvement. The doc has not tested for h. pylori even though I requested it. No swallow study either. I tell ya, it's hard to find a good GI doc around here. I should switch GI docs but it will be weeks before there is an opening. Guess that gives me time to do the gluten free test again!
Posted 10/25/2013 8:17 AM (GMT -6)
Have you tried different brands of ppi? Sometimes one works and another doesn't.

Have you considered lactose intolerance? It's really common and easy to work around.

Also, your regular doctor can test for h. pylori and anemia. Both are simple blood draws.

Posted 10/25/2013 8:26 AM (GMT -6)
Yes, tried several different types. Which is why I'm starting to suspect a new food intolerance. Yes, been lactose intolerant for 20 years, so I don't consume dairy often and if I do, I take lactaid.

In case anyone asks, I have also used high-quality probiotics and enzymes and neither of those made a difference.

For some reason both my internal med and GI doc are being very stubborn about this. I have no choice but to switch doctors because this pain, pressure, and nausea is getting worse to the point where I can barely function at times. Had this for such a long time that it's getting a bit insane. It's like my stomach/intestines are protesting everything I eat, but yet when my stomach is empty, they rebel even more. Whee!
Posted 10/25/2013 5:58 PM (GMT -6)
Lactose intolerance can be a sign of Celiac also , usually after Villi have healed alot of Celiacs can start having lactose again. I would seriously think about going on the GF diet!! Be totally committed to it tho!! Eating some will not help. Like someone stated about 3 weeks will probably do it. It is very frustrating to know your sick and the Drs. just cannot nail it down! Good luck let us know! :)
Posted 10/25/2013 6:03 PM (GMT -6)
Interesting about the lactose intolerance relationship!

I failed after a couple days the last time I tried a GF diet due to my hypoglycemia (long story). Seems like the non-gluten starches do not hold blood sugar nearly as well, so I was really feeling awful and went back to regular food. I will have to work hard on this to make it last the full 3 weeks but I have to. Also, I noticed there are labs you can find online that send out kits for gluten sensitivity - stool sample - and it's a very accurate test. It can also check for 9 other common food allergies like soy, nightshade veggies, etc. Think I might try that too!
Posted 10/29/2013 5:33 AM (GMT -6)
It is so interesting to really read and find out so much about Celiac. What it was doing to me, I had no idea! They treat each symptom and not think about why is this person having all these problems. Now that I have been Dx'd it all comes together. I just figured I had bad genes .... Nope I just have Celiac... There are worse things to have ....

Have you been eating GF? It is a good time now. Before Thanksgiving.
Posted 10/30/2013 9:04 AM (GMT -6)
Hi Michelle!
Your post struck a chord in me because your symptoms sound exactly like some of mine (all those related to GI). Last week I finally gave in and went to the doc. I had an ulcer, which sounds a lot like you might, too. He put me on ppis and h2blockers. Each one morning AND night, for at least four weeks to help it heal. Called it a Total Acid Block. It did take almost a week for the symptoms to get better. The fact that you feel worse in the morning when you haven't eaten and the nausea from time to time are actually hallmark signs of ulcers (I knew it, just live in a big town called Denial).
On the second point, have you done any reading on gluten withdrawal? Feeling crappy for the first four days at least is often a good sign that you do have some aspects of gluten intolerance or sensitivity at the least... And you might want to be managing your hypoglycemia more with proteins than carbs, anyway.
Read up on it a bit, then give it another shot if you have reason to believe you might be gluten intolerant. The symptoms you've listed, though seem more like classic peptic ulcer disease, which may or may not be completely unrelated to gluten.
Good luck!
Posted 11/16/2013 8:56 PM (GMT -6)
Maybe a fungus/yeast problem?? After eliminating gluten and yeast products, I feel 100% better, even though I tested negative for gluten intolerance/celiac. Tests don't always reveal all.
Posted 3/22/2014 9:23 PM (GMT -6)
Try gluten free for a good 2 weeks to a month. Be strict about it. See if you feel better. Even better.. Grain free. Processed grains are inflammatory and can cause acidic symptoms like acid reflux. Try it!
Posted 11/6/2014 1:54 PM (GMT -6)
Hi Michelle. My symptoms very closely match yours and I have also had a cardiac work up, etc. I noticed some time has passed since your last post. I was wondering if you have found out if you were gluten intolerant? I just started a gluten free diet yesterday hoping that would take care of the problem. Thanks for your help.
Posted 1/19/2015 1:16 PM (GMT -6)
maybe it's IBS? The gluten intolerance is like a gluten allergy and it is very rare.
Posted 1/26/2015 9:09 PM (GMT -6)
Hi there, hope you don't mind some advice from a new member although I have been diagnosed Celiac for over 7 years now.

One big food allergen for me even being gluten-free is Soy. When I was consuming soy it gave me almost the exact symptoms you are describing, kind of the same as when I ate wheat. Before being diagnosed I had had a misdiagnosed case of food poisoning that went on for too long and then properly diagnosed, in total about 3 weeks or so. After, is when my symptoms of Celiac became really prevalent. I had diarrhea, sometimes I would go 10 - 15 times a day and if I had to go, I had to go! I had an accident one day and left my dirty undies in the garbage in McDonald's garbage (that's how bad it was). My blood test was through the roof and then the confirmation with the small bowel biopsy, even today with my GI he says that I will never completely heal as my intestines have been so compromised and have had this all my life.

Look up symptoms of Soy, my hubby who is typical even had gut issues eating Soy.

Sorry you are going through this and hope you get some answers, you have gotten lots of great advice so far on this site - just remember - NEVER GIVE UP, YOU ARE YOUR ONLY ADVOCATE FOR YOUR HEALTH. Keep pestering your doctor and maybe they will get it.

LQ
Posted 1/28/2015 8:31 AM (GMT -6)
Hi!
Greetings from Sweden.

I decided to create this account so that I could give you the only important bit of information you need.

Ask your doctor to test you for antibodies. If you eat gluten and test negative for antibodies. It's not "Coeliac Disese". That's the only way to know for sure. No antibodies = not coeliac".

Good luck! :-)
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