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Hi there. I am a 59 yo colon cancer survivor - had chemo in 2020 and was just released from my oncologist's care a few weeks ago. The day of my release my annual blood tests showed that I was iron deficient anemic. (I get blood sugar and cholesterol checked by pcp every 6 months, but blood counts/platelets/hemoglobin is done annually by oncologist.) My pcp sent in a request for a stat colonoscopy to look for a leak in my GI system. Colonoscopy and endoscopy were both fine. Next week I'm doing a capsule endoscope. Gastro said he sent tissue for biopsy - I had just presumed that there were polyps again until I read the report he sent my pcp that said they were looking for celiacs. Looking at the list of symptoms, I have a lot of them. The neuropathy in my fingers and toes which I experienced during chemo had disappeared, but now its back. The arthritis in my fingers is flaring worse than ever (and its rare for it to flare when its 80 some degrees outside). My friend who had celiacs asked if I had a particular blood test yet - and I'm guessing they'll wait until the capsule results to do that. In the meantime I'm reading and getting ready. From what I've read so far, even if I don't have celiacs I think a reduction in gluten intake would do me some good.


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trents Grand Master

Welcome to the forum community @Arletta!

The blood tests for celiac disease check for certain antibodies produced by the inflammation that gluten ingestion causes in the lining of the small bowel of those who have the disease. Normally, the blood antibody testing comes before the endoscopy/biopsy but in your case the order was understandably reversed since they were doing the endoscopy for other reasons as well. What you need to know is that you should not cut back on gluten consumption before the blood draw to check for celiac antibodies. Doing so will likely reduce inflammation and thus reduce antibody levels and could result in false negatives. If anything, you should increase your consumption of wheat products in the meantime.

There are several antibody tests that can be performed when checking for celiac disease. The most popular one ordered by physicians is the tTG-IGA. Try talking your physician into ordering a more complete celiac panel, however, which would include total IGA, tTG-IGA, DGP-IGA and DGP-IGG. It's very important that the physician order the "total IGA" test as if total IGA is low it can result in falsely negative results in the tTG-IGA. Anemia can also give false negatives for the tTG-IGA. The tTG-IGA is the considered the chief antibody test for celiac disease. 

Here is a primer outlining the blood tests that can be run for celiac disease: 

 

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Thanks @trents. My friend mentioned the tTG-IGA test. As far as cutting back - my opinion during this is that I'm going to enjoy the gluten while I still can! Thanks for the feedback.

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    1. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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    4. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      results from 13 day gluten challenge - does this mean I can't have celiac?

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    • catnapt
      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say?  do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did  it take to get a diagnosis?   if you are legally blind there are adaptive devices that will help you. I have vision difficulties as well but did not qualify (at least not yet)   do you have a vit A deficiency? why are you undiagnosed? what does your ophthalmologist say? I have a retinal specialist and he tells me my eye condition can not be fixed- until/unless it gets to the point of where surgery is safer since the surgery can leave me actually blind... so you want to wait til it gets really bad 🤪     I hope you find what works for you.    PS   the medication I started at the same time as the gluten challenge is obvious from the condition it's trying to treat. you can google it 😉 it is not an for any auto immune condition.   
    • knitty kitty
      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
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