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Confused...

skappy

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skappy Newbie
skappy
Posted

About 3 years ago I was diagnosed with IBS (I went to the doc with bloating, changes in bowel movements, gas, etc). In May I was diagnosed with a gastric ulcer and was on meds for 3 months to find that the ulcer was gone but I had gastritis. After continuing on meds I continued to feel worse so I finally went off (I had tried 5 of 6 acid reducers and nothing worked). I actually felt better being off meds, but my IBS symptoms were still acting up.

I was recently tested for celiac and my IGA levels were 14 (11 is normal), IGG levels were 100 (11 is normal) and TTG levels were negative. I had a biopsy 3 years ago that came back negative. Is it possible to have developed celiac in that time period, or could the biopsy have been a false-negative? Are you born with celiac? In addition to the general "IBS" symptoms I have, I have experienced fairly rapid weight loss (10 pounds in about 3 months) with no change to my diet or activity (if anything I'm eating more unhealthy foods and exercising less). Any advice anyone can offer is greatly appreciated.

Thank you!!!

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ShayFL Enthusiast
ShayFL
Posted

Yes, you sure could have developed it in that 3 years time. Your blood work is STRONG positive and you should request a biopsy NOW to look for damage. Either way, there are plenty of doctors who would dx you with those bloods plus your symptoms alone.

If you are still eating gluten, now is the time for biopsy. Back then you may not have had enough damage to show up in biopsy. Or they didnt take enough samples from enough different areas or the technician was not skilled enough to read your slides correctly. You have likely had Celiac all along. So as you suspect....a false negative is very likely back then. This is a common situation for many in here.

You are not born with Celiac. You can be born with the genes, but you need a trigger (gluten). So as soon as you get formula or food with gluten you CAN develop Celiac (or at any point in your life). The truth is we simply do not know why exactly people with the same genes and exposure to the same triggers do not develop the disease the same.

You should ask for GENETIC testing as well just to make it complete.

So now. Get ALL of the testing out of the way and start eating gluten-free as soon as your biopsy is done. Prepare yourself and your kitchen. Be ready.

And here is to you getting better!!

skappy Newbie
skappy
Posted
  • Author

Thank you so much for the response! Everything you said makes perfect sense, and I am going to go get a biopsy. Hopefully I'll be able to change my diet after that and start feeling better soon!

Mom2Twins Rookie
Mom2Twins
Posted

I also wanted to add, from what I have read, is that while some of the tests are very specific (the tTG and EMA), they won't be positive until you have severe damage in your intestine. I think I read somewhere that a positive tTG correlates with total villous atrophy, meaing you have no villi left.

In most diseases, they don't wait for your organ to be destroyed before they diagnose you! I noticed your Ttg was normal - so you could be either gluten sensitive or in the early stages of celiac.

If your biopsy is normal, I would not count celiac or gluten sensitivity out. I read an amazing book recently - called "going against the grain", and I would recommend you read it. It really opened my eyes on the issues of grains and health problems.

All the best, keep us posted.

Sue

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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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