Gluten Intolerance - had anyone else shared similar experiences?

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jade09
New Member


Date Joined Feb 2014
Total Posts : 2
   Posted 2/12/2014 10:03 AM (GMT -6)   
I'll try and make a long question short - Since Jan. 1 of this year I went Gluten free. The reason I suspected it may be at play is due to problems which doctors keep attributing to IBS. From 15-18 I fluctuated between bouts of constipation and diarrhea - thinking it had to do with PMS I brushed it off. From 18 until now it's just been severe constipation and gas. All the doctor did was put me on a laxative that worked for a week then zilch. Since I was like 8 I've gotten migraines and headaches for no particular reason. I also had the keratosis pillaris, which I've read is a symptom of gluten intolerance/celiac disease on each arm for I don't know how long. There are a few other symptoms that I read about that fit the bill as well.
 
Anyhow, I accidentally ate something with flour in it late in January and 30-45 mins later I was bent over in debilitating pain. I ate about 7 spoons of a split pea soup, that's it that's all! I don't know if that reaction is normal, but I was thinking gluten intolerance versus celiac since I've gone most of my life eating (and loving) pasta and bread and such and not encountering anything like that.
 
However, the doctor also suggested before my gluten free bout that I may have diverticulitis (inflammation in the large intestine that causes infection due to slow bowel movement). Now, that pain I described above occured in the central and left hand side. Diverticulitis usually only appears on the left hand side. Now, since going gluten free (I also started Dairy Free a few days ago), I'm having mild pain in that left hand side...I'm wondering if anyone else has experienced anything else like this? For example, I made homemade beefy cabbage soup last night (no gluten) and my left side hurt (a mild dull ache for the rest of the night)...the only thing that could have POSSIBLY had gluten was the broth (barley yeast extract), but I figured if I'm gluten intolerant those trace amounts probably wouldn't affect me.
 
Pretty much I'm entirely new to this, and I just want my body to work in a regular way!!! The doctor's I've seen are useless and even if I ask for the celiac test, they likely won't do it. Plus I really don't want to have to start eating gluten again after the pain I mentioned before.
 
Any suggestions or related experiences are appreciated!!!!
 
Thanks!
 
 

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8382
   Posted 2/13/2014 9:20 AM (GMT -6)   
The pain you describe sounds more like gas. And if you tend to be constipated, pain on the left could be gas from having a bowel with lots of stool in it.

When I first adopted a GF diet I broke down after about a month and took a single bite of french bread. I got the most awful sharp pain in my upper GI and thought that I would never do that again. Honestly, I have no idea what that pain was - it has never happened since - but I have had the occasional slip-up and the classic reaction I get from that is diarrhea starting 12 hours after exposure. This has happened twice - both times I was served something that was supposed to be GF and wasn't. The most recent was an entire bowl of pasta. So yeah, I ate a giant chunk of gluten and paid for it for about 3 weeks.

Your issues, while annoying, don't seem to rise to the level that you are going to get scoped. Because honestly, the gut is really complicated and without a scope any "diagnosis" is just guessing. Your DR might recommend a scope if you lost a lot of weight, or became anemic, or passed blood. As it sounds from your post, none of these things are happening and that is great.

Try to find a healthy balanced diet that keeps your bowels moving. Drink lots of water and eat lots of fiber - both soluble and insoluble. Exercise often. Experiment with different levels of fiber content to see what YOU need to keep your bowels moving regularly. Consider adding psyllium to your diet as an extra boost of fiber. Include yogurt with active cultures and/or take a good probiotic too.
*******************
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

Sunny76
Regular Member


Date Joined Apr 2012
Total Posts : 33
   Posted 2/24/2014 6:26 PM (GMT -6)   
Jade,
You described my problems for the past 20 years almost to a T. The cabbage most likely caused irritation for you. Even gluten free, cabbage in cooked form or raw, along with stir fry, and lots of roughage (even steamed to death) causes my diverticular pouches to be irritated. Going GF is definitely a big help . . . but my doc says high fructose cornsyrup containing products and roughage when flaring is a no-no. He says after my flare ups to go liquid for 2 or 3 days. That usually helps me. Hope this helps.
Sunny76

rebounder4ever
New Member


Date Joined Feb 2014
Total Posts : 10
   Posted 2/28/2014 11:22 AM (GMT -6)   
If you are celiac, gluten sensitive, any and all amounts can begin to eliminate/flatten the villa in the lining.

Maybe watch out with ALL starches for a bit? Not sure. I would eliminate all gluten products: soups, gravies, hair products, sprays use wheat to get product to flow. Get to know all the gluten/celiac words hidden that mean WHEAT. No barley, oats, rye, either. You may have tapioca, quinoa, teff, buckwheat, amaranth! Have found pizzas, breads, etc that taste truly great.
You might want to go GMO free, as well. No soy. No canola. No corn. Try organic as much as you can afford, too,

We, here, bought shares to a cow and drank clean raw dairy for it's enzymes. The farmer checked each and every batch to be sure of its purity and would send the pdf when asked. He was adamant about cleaning those cows bottoms with iodine mixture (*similar to what docs/surgeons use on us) before even milking. The stuff was wonderful. OMG. Real dairy - untouched by some lab allowed by the government to ruin and make virtually useless. Protect the HUGE money making dairy farms only that tie up those poor animals and keep those machines on them 24/7/365. Oops, off topic.

My gluten sensitive family member has been GF since 09. She was found to have Hashimotos first - they go hand in hand. Then PCOS, which we are dealing with now. Old mono claims a epstein barr virus to be in her blood forever and will crop up. Now? MTHFR mutant gene: a1298C that plays in to all this as well.

Eating as nutritiously and healthily as you possibly can is a LIFESTYLE change. One you cannot fudge on at all. There are things you can trade on. Ease up on the sugar! We use organic stevia leaf with organic cane sugar, mixed together. The amount of actual sugar is nil. We may mix ceylon cinnamon in there to help with blood sugar spikes. She must be watched for type 2 diabetes closely now. Xylitol made from birch trees. Raw Honey is amazing.

Best of health to you.

No one can truly digest gluten. You don't need the test to prove you have a problem with it - although it is the only way to determine if you have damage to your villa in intestine.

Grain is in everything and much of the grain is in bad shape, itself. Full of molds.

Post Edited (rebounder4ever) : 2/28/2014 10:25:08 AM (GMT-7)


Mia1970
New Member


Date Joined Mar 2014
Total Posts : 1
   Posted 3/7/2014 6:55 AM (GMT -6)   
Hi,
I have had pretty much the same problems for many years now, and it didn't get better after going completely gluten free.
But finally I found out that my hormones are completely in disorder. I'm in early menopause with 43 and have had problems like hot flashes since I was 20. Also I was infertile even though my cycle was perfectly regular. I also attributed my problems like gas and pain to PMS, but then thought I couldn't possibly have PMS all the time. But I could and did, and now I have cycles with 4 weeks of horrible intestinal problems and then again cycles with no problem at all. I had my hormones tested, and they are a total mess.
Maybe see a gynecologist and have some tests?

ezgoindude
New Member


Date Joined Mar 2014
Total Posts : 12
   Posted 4/3/2014 7:52 PM (GMT -6)   
Hhhmmm it really could be a lot of things. Since you haven't been scoped yet you know it's not normal I would maybe go on a diet to help diverticulitis, or even just a food journal to list reactions.


I also agree about the gynecologist, my mom had symptoms very similar . Always bloated tired and constipation until they started her on hormone replacement which was with estrogen and testosterone. After about a week she was getting at least her energy and positive attitude back. She thinks the constipation is eating gluten or sugar, but she's still trying to work on that lol

guyfeelsgood
Regular Member


Date Joined Apr 2014
Total Posts : 161
   Posted 4/11/2014 5:11 AM (GMT -6)   
This is long bare with me.... my story and issues...


my stomach screwed up about two years ago...... my whole life i had ive had small heath problems
runny nose, sinus , random nose bleeds, some joint pain etc hard stools then soft , hemorrhoids, starting at 5 years old... then at 38 I was told I had colitis and then crohns. Stomach was a mess, acid reflux ulcers.. etc.. then a fistula in the rear end... I did every test under the sun. Anything a celiac doc and crohns doc could test. As well an allergy doc. Like so many I really didnt get anywhere. Just a list of meds... I came up negative on all standard testing available for celiac. At the allergy office the same thing happen.
I was told to make a food journal. I felt i was tossed under a bus. I began to question the practices and thoughts and guidelines docs use. I read up and heard alot about gluten intolerance and how they have no clue and you could have it. You can be intolerant but not get celiac or you are only celiac when you are finally diseased. I found the same wth crohns- you ae IBS until you ae diseased then you get stampled crohns... I thught this isnt right!!!!!! So I began my Gluten free diet... I felt better in 3 weeks... I then switched to the SCD diet and felt pretty good. I shopped in a good health food store and started to buy GF products and or make my own food.

I began to read alot of material on GLUTEN ,CELIAC and crohns diseases. I looked for advanced testing
the first thing I found was ---- get genetic tested for GLUTEN to see if I carried a genes. I did this and to my surprise WOW see below.... I you need HLA DQ 2 or DQ 8 genes.. Well this was me you only need one in the A area and one in the B area to react... i had two copies plus more for diabetes and sleep

my genetic results were this IN the HLA DQ area
1-4 associated with sensitivity or intolerance
1) DQA1*05:01 one copy associated with coeliac disease
2) DQA1*05:05 one copy associated with coeliac disease
3 )DQB1*02:01 associated with type 1 diabetes , copy associated with coeliac disease
4) DQB1*02:02 one copy associated with coeliac disease
As well I have more ---that fall under disease association / celiac Disease HLA DQA/DQB
HLA DQ ALLELES detected disease associations
5) DQA1*01:02---- narcolepsy- sleep disorder
6) DQB1*06:02 --- narcolepsy- sleep disorder, type 1 diabetes, type 2 Diabetes, , pemphigus-- Pemphigus foliaceus skin sores/ rash

I found this and said wow!!!!!! i I LOOKED all over the web for advanced testing.. I found http://www.elisaact.com/nonhc/our-unique-testing-method.asp this advanced test looks at reactions in the blood for other antibodies... I did this since the standard IGe allergy office testing same up negative. and felt making a food journal seem to be a joke....to me.
HERE---they test IGG,IGA, IGM tcell & IMMUNE Complex response all at the same time. Here I found I was reactive to potato, milk, butter, cheese, yogurt , milk protiens and milk bacteria, collard greens, apple and buck wheat. Seemed strange.. but I said ok ill remove all this (NO GLUTEN thou)??????

So I looked into more advanced testing.. I found www.enterolab.com A place that tests IGe fecal stool.
from what I read you could have a blood reaction or a reaction in you gut...two different places...
SO i did it
HERE -- i was reactive in my gut to --corn, rice, potato, milk, soy, gluten and grains.. I said wow...this is crazy!!!! (MY highest reactive food came back as gluten then SOY... What can I eat... I looked over my SCD diet.. then read up on gaps, paleo etc..I decided to modify all my food ,, it came down to low sugar, Paleo , with some good fats.

I then read up what other advanced testing I could find. I found one at LABcorp that not many docs use. called an IBD EXPANDED PANEL... Its a IBS crohns and colitis test... I tested all the gluten tests and I was negative for all. Looking over my paper work from all my docs I did see they ran a test called HLA disease association it said positive. Yet they didnt say anything or go anywhere with it.. I later realized this should have pointed me to get genetic tested... I did the Labcorp test --IBD EXPANDED PANEL was the next step for me...in my choice..this tests antibodies, ALCA ,AMCA,ACCA, ASCA. and another. they all mean something foods, yeasts , etc
I found that I was high in AMCA and ALCA AMCA was candida yeast and ALCA was any thing digested as sugars... Well i found all the reactive foods i had in blood and gut testing digest as sugars
potato, corn, rice , milk, breads, pasta, gluten , grains..I will point out I never really felt bad when i ate all these but t did have all these strange health issues and i did feel better gluten free.

SO I found a place that looked at your gut bacteria and yeast. They had two tests one for urine and one for stool. This place looked at the good bacteria in your gut as well the bad. as well the toxins bacteria or yeast release in your urine. They talked about yeast keeping your ph low. and not having good bacteria will allow bad bacteria to thrive. so I went for it

I did this test OAT test http://www.greatplainslaboratory.com/home/eng/full_oat.asp my results showed high yeast toxins in my urine and bad bacteria toxins. (see there example) I also did there gut test http://www.greatplainslaboratory.com/home/eng/stool.asp here I was low on good bacteria. Had over growth of a strain of bad bacteria and my yeast was out the roof in stool testing..I showed inflammation etc many test markers(see example) I said wow here too.

I looked all this up and food like I said I needed to remove sugars... SO I did with my diet. I ate paleo but low sugar. I then read on candida and those candida diets.. my greatplans lab showed yeast, my IBD panel showed AMCA candida and ALCA sugars .. i figured why not.. I took antifungals and ate this way for over a year... it was hard.. I started to retest all of these tests (it wasnt cheap) I found my IBD EXPANDED PANEL numbers started to lower..YEAH!!!!! I decided to get do this test every 3 to 4 months... everytime it went down!!!!! i seemed to be healing....

Its been over two years now...... and many of my intolerances went away. I stuck hard on my diet--- making sure to not eat any foods that digest as sugar. my health came back and I felt great. I noticed starting my diet all the GF foods were corn rice or potato flour...when i read all the labels... and they feed my yeast and bad bacteria. today its been over two years , I can now eat gluten and pretty much anything with out it bothering me.. But I do track my amca from the IBD expanded panel making sure its in the negative range. I aslo retested my great plans and NO yeast now!!!! my good bacteria is high.. it is said that that good bacteria produce there own antibtiotics and anti fungals to protect you.. I as well raise your PH.. I believe this now..it happen to me..

The only food that seems to make my sinus go nuts now is SOY.... I feel all my intolerances are now gone. I can drink beer, eat pizza , pastries etc.. I choose not to.. but on a trip or party etc I ll eat some.. nothing on a regular basis. But I now have no problems..I think sugar is the killer here.. giving you yeast over growth..

Not sure but my method may help others.... I found that candida yeast gave me the gluten intolerance and other food intolerances. I feel some how or time I got over run by yeast... from drinking to much beer, eating to many foods that digest as sugar and antibotics. I now make sure to limit any of that..
As i dont want to go back to any of that discomfort and pain. I also found that the candida protein in research looks like the gluten protein. Im going out on a guess. But feel after my body was over ran by yeast.. my immune system could not tell the difference in candida and gluten(due to my genes).. the yeast ate all the sugar and robbed me of all the vitamins and minerals I needed.

this is just a thought ????? just my story .. I know we are all different
i feel by having all the extra genes for gluten it made it harder for my immune system to tell the difference. over time... all my health problems at the top went away.. I point it all to yeast and low gut bacteria....SUGAR

1) DQA1*05:01 one copy associated with coeliac disease
2) DQA1*05:05 one copy associated with coeliac disease
3 )DQB1*02:01 associated with type 1 diabetes , copy associated with coeliac disease
4) DQB1*02:02 one copy associated with coeliac disease
As well I have more ---that fall under disease association / celiac Disease HLA DQA/DQB
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