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New To Forum- My Issues, Getting A Biopsie...


Cathou

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Cathou Newbie

Hi everyone,

I'm so glad to have found this forum! I've been feeling like a hypochondriac because I'm constantly talking about how bad I feel around co-workers and hubby. I can't remember when it all started but I'd say in the last 2 years... but gradually until there was cause for concern in the past 6 months.

I have food allergies and the worst offender is WHEAT! I have this condition called "Exercise Induced Anaphylaxis" which is most likely food dependent and triggered by foods that I'm intolerant (or allergic) to. So I have to carry an epipen with me at all times. The symptoms I get when this happens are: Hives, swelling of the face and difficulty breathing (feels like asthma). Anyway, since the allergy test diagnosed the wheat allergy (about 2 yrs. ago) I continued eating wheat not thinking that it could also be the culprit of other issues I have.

For the past 6 months, I've been bloated 24/7 and look like I'm 5 months pregnant. I'm either constipated or have diarrhea. Have difficulty digesting all the time but also hungry all the time! Although I exercise 4-5 days a week, I don't lose weight. I started reading on gluten and celiac and feel like if I don't have Celiac, then I MUST have some kind of intolerance.

Went to see a GI 2 weeks ago, she and my general doctor both believe I have IBS but the GI has scheduled an endoscopy right away for end of March. I had stopped eating Gluten last month to see if it helped my situation (which I think it did) but of course, she put me back on it for the test. Now I'm worse than ever (the bloating) and I can't wait to do the biopsy so that I can quit eating Gluten again. On my 3 weeks off gluten, my bloating diminished - although it was still there - and I actually lost a few pounds. I really feel it was helping... I also think I might be lactose intolerant... The GI told me that a good test I can do at home is drink 3 glasses of cow's milk and that if I'm LI, I'll have cramps and feel really bad. I haven't done it yet... She suggested that I start using fiber supplements


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    • trents
      That's just it. When they are doing an EGD, even with biopsy, if they aren't thinking about celiac disease they may miss it. They should take several samples from both the duodenum and the duodenum bulb. Damage can be patchy and easily missed if sampling isn't through. And patch damage may explain lack of dramatic symptoms. Let me assure you that we frequently have posters on this forum who were silent celiacs for years and were diagnosed incidentally with celiac disease when their docs were checking for other things. They developed other medical problems such as anemia or vitamin and mineral deficiencies, neurological deficits, Hashimodo's thyroid, osteoporois, etc. - non GI symptoms - but their docs recognized those problems as often connected to celiac disease and had them checked for celiac disease, both blood antibody testing and biopsy, and found damage. A couple of years ago the Mayo Clinic did a large study involving over 300 people. They started with those officially diagnosed with celiac disease and also tested their first degree relatives. They found that almost 50% of  the first degree relatives tested positive for celiac disease and many or most were totally caught by surprise because they were largely asymptomatic. Their diagnosis was confirmed by biopsy. I really don't have anything more to say. You have some decisions to make.
    • knitty kitty
      Blood tests are affected by what you've had to eat in the previous day or two and any vitamin supplements you've taken in the past month or two.   If you have been taking vitamins before the time of the blood test, the vitamins supplements could mask a deficiency.  So get the tests before supplementing, or allow eight to twelve weeks for the supplements to wear off.    The thing with blood tests is that they measure what is in the blood, not what is stored inside organs and tissues where vitamins are actually utilized, and may miss subclinical deficiencies.  In times of shortages, the brain can order cells to release their stored vitamins into the blood stream in order to keep important organs like the brain and heart functioning.   Overall, getting blood tests for deficiencies is a good idea if it's available to you.  If you're deficient in any of the B vitamins, take a B Complex with all the B's in it.  The eight B vitamins work with one another like an orchestra.  Supplementing just one can throw the others off.  
    • Shining My Light
      Thank you @trents! This is all sound advice. In 2022 I did have a biopsy done with the EGD: SPECIMEN: (A) DUODENUM, BIOPSY (B) GASTRIC BIOPSY(C) GASTRIC POLYP, BIOPSY(D) ESOPHAGUS BIOPSY (E) ESOPHAGUS BIOPSY This would have been when the candida was found.  If I understand right it’s the duodenum they take a biopsy of. Nothing was mentioned about Villous atrophy however they were not looking for that particularly.    Something that stumps me is the correlation between symptoms and damage. One seems to equal the other. I have yet to see damage with “silent celiac”. Not saying it doesn’t exist.  Also super curious on other symptoms that would improve based on a gluten free diet. Obviously silent celiac wouldn’t have an improvement in GI symptoms but that is all I have read any data for. No one saying things like my anxiety went away or my headaches and joint pain are gone.    I see why it would be a “gluten challenge” since eating 4-6 slices of bread daily is a challenge to do. 😳 I would replace that with cake 🍰😉 
    • xxnonamexx
      I know I haven't been tested for Celiac yet. But If I took a blood test would they be able to say what I am deficient in as far as vitamins and minerals so I can see what supplements to take or is it not that easy to figure out what is needed to balance out vitamins/minerals. 
    • trents
      All that is exactly why you should have an endoscopy with a biopsy of the small bowel lining done. It's a very simple procedure and in the US they put you under for it so there is no discomfort. You don't even have to do a cleanout like you do for a colonoscopy.  It might also be wise to wait a few months and get the tTG-IGA checked again if nothing else. If it elevated now due to some temporary infectious process, it should not remain elevated. But a biopsy would distinguish between IBD and celiac disease. And remember, the diagnosing of diseases is often not a black and white, cut and dry process. You often have to weigh all the evidence and just go with what is most likely the cause. When tTG-IGA is elevated, the most likely cause is celiac disease. And the gold standard test for diagnosing celiac disease is still the endoscopy with biopsy. But if you decide to go for further testing for celiac disease of any kind, you must not first embark on the gluten free diet.
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