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Am I Celiac Or Gluten Intolerant ?


ectobia

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ectobia Newbie

Ive always had a bunc of zit stuff on my back and chest even when i shower twice a day, my butt itchs like crazy sometimes, I quit cereal for two weeks and started again a few days ago, and i feel a lot worse, bloated, incontinence, sore spot on right side of my pelvis, sometimes i have rash on one or borth right on my elbows, my incomptenent doctor said that i had an "abnormal" white blood cell... but that they know everything and that it was nothing, and i'd just have to live with it, my stool is usually loose, even tho i feel painfully constipated.


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jerseyangel Proficient

Hi Ectobia--Welcome! Looks to me like you have some symptoms that could point to a gluten intolerance. If you feel like you want a diagnosis, I would suggest you make an appt. with a gastroenterologist. One that already treats patients with Celiac would be best, if you can find one. Do not go off gluten if you wish to be tested--it will affect the results. If testing isn't important to you, you could go gluten-free yourself. It has to be 100%--and I would give it at least a month. 100% means all food, beverages, medicines, vitamins, personal care products. You would need to watch out for cross contamination in your kitchen and when eating out (eating out in the beginning is very risky). If you need any help with the diet or how to de-gluten your kitchen, just ask. There are a lot of very nice, knowledgeable people here who would be glad to help. Stay in touch and let us know how you are doing :)

VydorScope Proficient

You asked

" Am I Celiac Or Gluten Intolerant ?"

The answer, it realy does not matter. They might as well be synomons. They both cause damage, and the treatment for both is the same. They both require 100% gluten-free for life.

ectobia Newbie

thanks for replying, I think that if id have to go on gluten again to be tested thats not something i'd ever be willing to do, but i asked cause i read some stuff about celiac causing damage in gi tract and i didn't want to think about it, so i think i'd ready to be commited to being 100% gluten-free now, i just went and bought all gluten free groceries, it was sooo expensive!, anyways

how do I de-gluten my kitchen, so far I've read about not using metal cookware used to cook gluten in.

what else can I do in the kitchen?

jerseyangel Proficient

Metal/stainless steel cookware is fine--just make sure you scrub it out thoroughly. It's best to replace any non stick pans if they are scratched. Other things to replace--collander, toaster (get one to use for gluten-free breads only), wooden cutting boards and utensils, cast iron pans that have been used to prepare gluten foods. Clean the crumbs out of the silverware drawer. I took the seperators out and ran them through the dishwasher. Plates, glassware and silverware are fine. It's a good idea to dedicate some shelves in a cabnet or pantry for gluten-free foods only. Clean well--refrigerator shelves, cabnet shelves, microwave interior, toaster oven, counter tops.

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    • trents
      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
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