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Having Some Trouble, Need Advice.

Bucsfan11

By Bucsfan11
in Coping with Celiac Disease

Recommended Posts

Bucsfan11 Rookie
Bucsfan11
Posted

Hey all, its been awhile since ive been on here, dang school keeping me busy. Anyway, I was never diagnosed with Celiac, I have been tested and came back normal, but after having diarrhea for years and always being told I have IBS i was no longer willing to take that diagnosis.

Anyway, I have been gluten free for about a year now and all my symptoms went away. I was feeling great! and I actually enjoyed gluten free food. Well for the past two weeks my symptoms have all returned. Diarrhea after I eat, going about 5-8 times a day. Extreme urgency, etc. I have double and tripple checked all the thing is I have been eating and there are all gluten free, bought from a gluten free store.

So I talked with my GI and he wants to put me on cholestyramine (qustran, sp?). I still have my gallbladder!! so I was just wondering if any other people on here have tried this or any advice on in.

Has anyone gone gluten free to find out it stopped working down the road?

Any help would be greatly appreciated.

Thank you all so much, Sean.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Have you checked all nonfood sources for gluten? Your shampoos, toiletries, craft supplies etc? Have you done any remodeling or home improvement projects? Many things used for that are not safe. Have you added any new supplements? Are you on any meds that are generics? Generics can change their binders at will so one that was safe last refill may not be with todays. Look around and try to figure out what is new and changed. Keep in mind also that not everything is gluten so do have your doctor do stool testing to make sure you have not picked up something in the way of a food borne illness like salmonella etc.

ShayFL Enthusiast
ShayFL
Posted

Have you considered dairy? Intolerances can show up at anytime.

New girlfriend or boyfriend whom you kiss that may have eaten gluten prior to your kissing them?

dilettantesteph Collaborator
dilettantesteph
Posted

How about a transglutaminase blood test? It could tell you if you getting gluten by accident. How about hay? Some "gluten free" food isn't actually all that gluten free and will make some people sick. Check if it was made in a facility that also processes wheat. Double check anything new. Try eliminating all processed foods and see if that helps. Good luck, hope it doesn't happen to me.

Bucsfan11 Rookie
Bucsfan11
Posted
  • Author

Thanks for all of the advice and support all!! I really do appreciate it. I have not added anything new to my diet is the thing! I eat basically the same stuff every day, it gets old, but is way worth it because I dont get the Diarrhea anymore, well untill lately.

I will do what Ravenwoodglass has said about checking with the meds. I take a generic version of medicine for seizures, and I take it three times a day so that could be it. Even though, today was a lot better today, so I will see how tomorrow goes. Thank you all for the support it is greatly appreciated and helpfull. Have a good weekend!!

Sean.

Janessa Rookie
Janessa
Posted

If you are eating the same things everyday then it is very likely you would get additional intolerances. I developed more intolerances about a year after going gluten free because I was eating a lot of the same things everyday too.

Talk to your doctor about doing an elimination diet to figure out if other things are bugging you, you eliminate all major allergens plus anything else you eat on a daily basis and then one by one add them back and see if you react.

sbj Rookie
sbj
Posted

Have you considered some likely causes other than glutening?

Viruses? ... Viral diarrhea spreads easily.

Bacteria and parasites? ... Diarrhea caused by bacteria and parasites can be common when traveling

Medications? Many medications can cause diarrhea. The most common are antibiotics.

Lactose, fructose, or artificial sweeteners?

Hope you feel better!

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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
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      High DGP-A with normal IGA

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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