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"probable Coeliac Disease"

Jenni121

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Jenni121 Rookie
Jenni121
Posted

Hi all,

I think my life is about to change dramatically in the next few days.

A couple of weeks ago I had a blood test to exclude coeliac disease, and the results came back overwhelmingly positive.

I had my endoscopy yesterday, and the report says "probable coeliac disease". I am awaiting the results of the biopsy which should be back in a few days.

Seems there's a good chance I have this.

The only symptom I had that led me to get tested is anaemia. But after reading a bit about "brain fog", I realised I have been suffering from this too. I just thought I was losing the plot. I'm only 26, so that's a scary thought. On the one hand I'm hoping its not celiac disease, just because the change is so dramatic and lifelong. But on the other hand, it would explain (and hopefully fix) alot.

It all feels a bit surreal right now.

Is living gluten free really as difficult as it sounds?

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pricklypear1971 Community Regular
pricklypear1971
Posted

That's a loaded question.

I think particular lifestyles will not lend themselveS easily to a gluten-free diet - traveling for work (constant restaurant meals) is an example.

If you are used to eating a high gluten, processed food diet, the transition may be more difficult.

If you have other food issues, that can increase the difficulty..,

So technically, no, gluten-free isn't that difficult (it's easy at home) but I think learning the ropes can be trying. Managing multiple food issues is very difficult, I think.

In the end, though, feeling better is worth it. So, welcome and keep on truckin'! Read through the forums and ask lots of questions.

eatmeat4good Enthusiast
eatmeat4good
Posted

It would be great if your symptoms resolve. I "missed the plot" for 47 years. I feels really good to be able to get the plot now.

Being gluten free is a bit "messy" in the beginning as you will have to clean out the kitchen and bathroom of gluten, and I invariably got sick on those days. But when you figure it out and you start to enjoy cooking and eating, it isn't really hard. Just be prepared for a lot of surprises as you find where gluten hides.

It has been wonderful not to have brain fog and to watch my body heal. I hope you have the same wonderful experience. It makes it alright when you have to avoid restaurants and other people's cooking. I just remember what it was like to be sick all those years and suddenly I'm very grateful for gluten free food and the gluten free lifestyle.

If you are postive and you have to go gluten free, just remind yourself that you are saving yourself from years of mysterious illness with no solution, and you might have avoided the development auto-immune diseases that plague some of us who found out late in life.

Read, read, read. I read every label for the last year and I only glutened myself the one time I didn't read the label. Ugh. But I learned...and you will too. It can be kind of fun to know that the solution is so simple...just avoid gluten and you will be fine. Not many people have that kind of control over their disease. I feel happy about that.

Jenni121 Rookie
Jenni121
Posted
  • Author

Thanks so much for the replies.

I just got back from the Dr. Results are in... I've got celiac disease.

Its very daunting to think there are things I'm never going to eat again, for the rest of my life. That's a long time!

But you're both right, it will be worth it.

Over I hop to the "post diagnosis" forum for some more advice and words of wisdom :)

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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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