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guitarplayer4God

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guitarplayer4God Explorer
guitarplayer4God
Posted

I recently tested positive on my blood test for celiac disease. I have an appointment with a new gastro Dr in two weeks. I'm sure they will want to scope me but I don't want to suffer for several more weeks. Does anyone have an opinion?

Can anyone please explain the following blood tests?

Endo, IgA Screen

Endo, IgA Titer

Tissue Transglutaminase Ab, IgA

How reliable are the blood test for the diagnoses?

Thank you!

Beth

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AndreaB Contributor
AndreaB
Posted

Beth,

Welcome to the forum! :D

You will find a lot of wonderful people here with a lot of information.

I don't know specifically about the blood tests. Seems they are more accurate than the biopsy. If you already have been tested and found to have celiac than that would mean that the IgA in your blood is elevated. I haven't had any done. We went through enterolab as a family because of my infant son's reaction to gluten. We all have a reaction to gluten (except my husband) that I doubt would have been caught be the blood test as we don't show any classic symptoms. From what I've read from others posts the biopsy can be hit and miss depending on what the condition of your intestines are where they take the samples from.

  • 2 months later...
Swingin' Celiac Newbie
Swingin' Celiac
Posted
I recently tested positive on my blood test for celiac disease. I have an appointment with a new gastro Dr in two weeks. I'm sure they will want to scope me but I don't want to suffer for several more weeks. Does anyone have an opinion?

Can anyone please explain the following blood tests?

Endo, IgA Screen

Endo, IgA Titer

Tissue Transglutaminase Ab, IgA

How reliable are the blood test for the diagnoses?

Thank you!

Beth

Hey Beth, welcome to the club :D . To answer your questions the blood tests you listed are all a part of what the docs like to call the celiac blood panel. The Endomysial Ab IgA screen just tells you if your blood is positive or negative for this antibody, and I believe the titer tells the doctors something about the actual concentration of it. Tissue Transglutaminase Ab, IgA is another antibody test; negative is <5U/ML, inconclusive is 5-8U/ML, and positive is >8U/ML. In basic terms they just show if your body's having an autoimmune reaction from gluten. These antibodies pop up in your blood in higher concentrations when you are. From my understanding, it's impossible to get a false positive in a celiac panel (unless they test someone elses blood :o ) so you're not allowed to go into denial. However, it is possible to have celiac and test negative. As far as the biopsy goes, your doctor probably wants to do it in order to have something to compare your improvements to. They can't really tell if you're actually healing without a biopsy (not even a blood test can help you there). My advice would be to stick it out, let them take a few pictures and send a lovely piece of intestinal tissue to the pathologist to see how bad it is to begin with so that they can tell if you're making any headway later on. Don't worry about the endoscopy, I've had two done and I've observed a heck of a lot more when I shadowed G.I. docs (did I mention I'm premed?). It's really nothing to worry about, and the possible complications are really rare (unless you have some kind of bleeding disorder or something). The actual test is only like 5 to 10 minutes, but the sedation makes it seem longer. Just look forward to all the fun pictures of your insides that you'll get to keep and share with your friends :D . Best of luck. Oh and DO NOT start a gluten-free diet before the endoscopy as it will mess with your results. Hope that helps!

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  • Recent Activity

    1. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
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      Son's legs shaking

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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