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Not Sure If They Tested Total Iga

anabananakins

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anabananakins Explorer
anabananakins
Posted

Hi, I have a few questions and lots of rambling...

I had celiac tests about 6 weeks ago, they came up negative. I had been gluten free for about 3 weeks, then put myself on a gluten challenge for 6 weeks before testing, and I'm aware that might have been an issue. When the came back negative my doctor said there was nothing to worry about, and she's focused more on my insulin resistance/pcos (diagnosed last year). But now I'm wondering too whether they tested Total IgA. It wasn't listed as a separate line on my results. I found the guide for doctors issued by the pathology lab that did the tests, and it says that "coeliac sereology" (which is what my doctor ordered) includes:

Coeliac Disease Serology

Includes IgA Gliadin Ab Tissue and IgA

Transglutaminase (TTG) Ab

My understanding is that if I'm IgA deficient then these results would give a false negative, but I'm not sure if that test was done, or if my doctor should have ordered it in addition to 'coeliac sereology'. I'm in Australia - how does it compare to other people's results?

My stomach symptoms were the worst when I first started eating gluten again after being gluten free, but the fatigue, balance issues and bloating have been around forever it feels. My gluten free weeks were unintentional, I was following the 'paleo diet' because I've discovered that I need to keep my carbs pretty low in order to lose weight (because of the insulin resistance). The fatigue could be attributed to the IR, especially since the gluten challenge meant I ate way more carbs than I can really cope with (and I gained 10 very unnecessary pounds in a few weeks, gah), but that's only one part of it. My B12 levels were 357 I think which was fine according to the range given but I've read here that it should be higher. My ferritin level was one above the minimum in the range. The doctor thought all was fine. I take metformin for the insulin resistance and that can affect B12, but the issues I had with balance go back way before I started taking it. My understanding is that gluten can affect balance either through B12 deficiency, or by directly affecting the brain, is that correct?

I'm seeing another doctor next Monday, a GP who specialises in coeliac and I'll see what she says, but I'm curious what you all think since I've read so many of your posts and found them really helpful. I think either way I will try going gluten free, but I don't have a good track record for sticking to diet-type things since I've struggled for so long with my weight. I'm also concerned about the balance issues. A chiropractor told me that I had one of the worst responses he'd seen to the test where you put your feet together and close your eyes (I tip straight over) but my GP got me to do some other tests and didn't see any concerns. What to think? I really feel I need a diagnosis to get myself, and others, to take it seriously and I know I wouldn't have the insulin resistance/pcos diagnosis if I hadn't pushed that every step of the way. I've already had the 'don't be silly, coeliac is incredibly rare' response from my mum, who then went on to describe the various digestive issues she and her father both had. She does concede I may well have issues with gluten.

Oh, i should add that I've stayed on gluten since I first noticed it was an issue and so my 'challenge' has been nearly 12 weeks now. I spent the first 6-8 weeks in a world of bloated, crampy, headachey, heartburn hell, desperate to give it up but it seemed worth it while I was waiting to see the 2nd doctor and I don't feel so bad now. I wonder if blood tests at 6 weeks and 12 weeks would show much difference? Dr Green's book says a gluten challenge should be followed by a biopsy, not more test results. Wonder what the 2nd doc will think?

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WheatChef Apprentice
WheatChef
Posted

From the wording it looks like they ordered IgA-Gliadin, tTG-antibodies (AB) and total IgA. You've certainly got a lot of the different problems associated with gluten-intolerance so good luck on getting to the bottom of it. The only really important thing in all of it however is whether or not you feel better while gluten free.

nora-n Rookie
nora-n
Posted

To me, it sounds like total IgA is not in the celiac panel, and not done.

Here most places in Europe, the total IgA is automatically done with a celiac panel.

anabananakins Explorer
anabananakins
Posted
  • Author

Thank you to both of you for replying, I will ask my new doctor and see what she thinks.

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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