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Negative Tests

missanomaly

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missanomaly Newbie
missanomaly
Posted

I had an endoscopy today, and apparently everything looked normal. (I was still groggy or something when the doctor came, but that's what my friend told me he said...) I'm still waiting on the results from the biopsies, but I'm terrified they are going to come back negative too. I've been sick for a long time (alternating nausea/cramping/feeling like my stomach is on fire). I've also had alternating constipation and diarhea, and a nasty case of vertigo a few weeks ago. I've had a constant headache for the past week, and a lot of times I see excessive after images. I'm convinced my friends think i'm just crazy because I tell them I'm sick all the time. If I get one more negative test result I might cry :(

Do a lot of people get a normal looking endoscopy but positive biopsy results?

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eatmeat4good Enthusiast
eatmeat4good
Posted

Yes, many many here have tried testing but it was negative. Tried the diet and got rid of all their symptoms.

Don't lose hope. Testing is only part of the answer. There is a high rate of false negatives and you are still in control of what you eat.

This is when you try the gluten free diet very strictly for yourself. You may be gluten intolerant or one of those who have it, but not high enough in antibodies to test positive.

All of your symptoms seem to match and you have nothing to lose but pain in trying the diet. Testing helps give an answer, but it doesn't mean it is accurate.

Elimination is 100% accurate. If you want to test/challenge by eating gluten after a couple of weeks you can.

Many get very sick from that next bite of gluten once it is out of your system. Now you start investigating and listening to your body reactions.

missanomaly Newbie
missanomaly
Posted
  • Author

Thanks for the advice! It's very comforting to hear I'm not crazy. Just went out and bought gluten free stuff!

Thanks again!

ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome and do read as much here as you can. Your doctor can not tell just by looking whether you will be positive on biopsy or not. That's why they need to do the biopsy.

It is best at first to go with whole unprocessed food as much as possible. You will need a new gluten-free dedicated toaster, replace all condiments, nut butter, etc that you had used when you were eating gluten and don't share them with non gluten free folks. Also replace your pasta strainer and any wooden or scratched utensils and pans. Even a small amount of gluten will keep you reacting so you need to be very strict with the diet. It is also a good idea to avoid restaurants at first as the CC risk is high in many. If you must eat out do so at places that have a gluten-free menu. Good luck and I hope you are feeling better soon.

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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
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    • 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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