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Undiagnosed Gluten Intolerance/celiac

sickly

By sickly
in Coping with Celiac Disease

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sickly Newbie
sickly
Posted

I am new this site and am so desperate to feel better right now!! I have had every test under the sun for any G.I. disorders and none diagnosed. The new G.I. i saw has put me on antibiotics for SIBO.

I have tried very, very hard to avoid anything with artificial sugars and gluten. I am going for my 2nd endoscopy on Monday. Should I continue to "be sick" for this test? I feel like there is no help for me out there!!

A question I have is when I am having an "episode" of illness, what can I do to make me feel better? I am sick for days, can't eat, can't drink, loose weight, etc.

At my wits end :(

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Philadelphia Newbie
Philadelphia
Posted

Obviously, you can try the antibiotics for the SIBO. If thats truly the issue, hopefully it will help.

If you feel like you identify many of your symptoms with those of gluten intolerance (this is what I did) then yes, I would definitely recommend trying a gluten free diet to see if it helps you. Like you, I had every test I could think of and could never find a problem. I've been gluten free for 9 weeks now and I feel better than I have in years.

At this point, I suppose you should continue eating normally until the test, just in case it helps them find evidence of Celiac in your colon? Its up to you though. I have felt that for YEARS there was no help for me, either, but do not give you. Your body is reacting to SOMETHING. There is an answer that works for you - I hope you find that going gluten free brings you the relief that it has for me.

When I get sick - it could be any of a range of awful symptoms and plenty of pain - nothing seems to help. Drink water and if you eat, eat something safe like plain rice... something that is gluten free! Whenever I've been "glutened" since going gluten free, I find that I simply have to wait about a week and wait it out. There is nothing that can fix it, I simply must wait until its out of my system.

Please update this post after you receive your results. After your endoscopy, I would also say that, if you think gluten could be the issue, you should try a gluten-free diet. If you'd like, I have a personal document I keep which is a compiled list of tons of gluten free foods. When I first went gluten free, I was never sure what was safe or not, so I started compiling information from across this board and various manufacturer websites into one document to help me. If you'd like me to give it to you, let me know.

I hope you feel better, you have our support.

Philadelphia Newbie
Philadelphia
Posted

How did everything go? Any update for us? Are you now going to try going gluten free?

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
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      Question

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

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      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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