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Now I Know I Am Celiac

Gerri

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Gerri Explorer
Gerri
Posted

I couldn't understand until I fired my doctor, and got my lab work back, why my ex doctor told me to stay off Gluten the rest of my life.

Tissue transgluaminase IgA *normal is less than 5*, my reading was 5. This number is the lowest level for Celiac, but the blood work was done during a time I was watching the amount of gluten and cutting back (had totally been off gluten for 4 weeks). Then I was back on gluten. The six weeks of forcing myself to eating gluten, nearly killed myself doing it. I landed in hospital twice. I was so very sick, but doctors still didn't hear me and went ahead with small intestine biopsy. It showed I had hiatus hernia, ongoing inflamation of my esophogus, a duodenal diverticulum, all signs of celiac damage. Still I wasn't diagnosed with Celiac. This was on report dated December 2008.

It's now February 24th my observations and why I will get a doctor to diagnose me with celiac:

1: Diabetes brought totally under control following a Celiac diet, that I started right after the biopsy.

2: My severe sleep apnea, seems to be brought totally under control, to a point I may not need my CPAP. (7 years of CPAP use for severe obstructed sleep apnea, with Central Apnea, and then nothing)

3: Lastly as the pressure of my CPAP was brought down, with help of sleep doctor, I am finally started to loose weight. I lose 2 lbs overnight.

I am so in shock, since yesterday when the doctor said I would have to have another sleep study (this coming Saturday), but at the moment he would say, from the numbers he seen, I didn't have sleep apnea. He also said he would not say I didn't have sleep apnea because he didn't have base numbers as I moved from Sarnia area to Kitchener. He did ask the technician to put pressure down to 11 from 15.

Last night and this morning, I had more optical migraines. I still have lots of swelling around eyes, and hands, my RF value is high. I think Celiac has caused lots of damage to my health.

Hugs

Gerri

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oceangirl Collaborator
oceangirl
Posted

It's great you are getting to the bottom of your ills. Keep reading here and good luck with continued health.

lisa

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    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      Welcome to the forum, @WildFlower1! The reason you are seeing conflicting results when you research the length of time recommended for doing the "gluten challenge" is that the guidelines have recently been under revision. So there are two components: 1. amount of daily gluten consumption and 2. duration of that amount of daily gluten consumption Recently, the guidelines have been under revision because the medical community was sensing the previous standards were too relaxed, particularly in the daily amount of recommended gluten consumption. The more recent guidelines seem to be calling for higher amounts of daily gluten consumption over (perhaps) as shorter period of time. So, it is becoming a daily minimum of 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for a minimum of two weeks. Personally, I would recommend that amount of consumption be extended from two weeks to four weeks to ensure valid testing. Your Immunoglobulin IgA at 1.25. Was that within normal range? If that one is low, you are IgA deficient and other IgA test results cannot be trusted. But regardless of whether or not you have celiac disease or NCGS (Non Celiac Gluten Sensitivity) the antidote is the same, namely, a gluten free diet. What would you do different if you had a more confident differential diagnosis? And there are other reasons for the development of osteopenia/osteoporosis that you probably should explore. Are you on any serious supplementation for D3 and magnesium?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      The results of my blood tests after 4 weeks: *Tissue Transglutaminase Ab IgA —->   “<0.5 NEGATIVE” *Immunoglobulin IgA —-> “1.25” *Deamidated Gliadin peptide Ab IgG —-> “<0.5 NEGATIVE”    
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Hi there, I have been scouring the forums, medical journals, celiac websites, speaking to my doctor and there seems to be a contradiction in the exact amount of time one must do the gluten challenge for a blood test. Let me please express my gratitude for taking your time to help! I will try and keep this short. In a nutshell, I am positive genetically for celiac. Previously for many years 10+ I have been on a strict gluten free diet. At a very young age, I had infertility, hair loss, low iron, stomach problems, neurological symptoms, continued low bone density etc. etc. all the symptoms that line up with celiac.  I could never get an “official diagnosis” because I was not eating gluten for years.   Recently, I had a bone density scan, and was shocked at the results. I am young and my low bone density is continuously lowering. This lead me  to seriously consider doing the celiac blood test to confirm if I actually have celiac. Years ago, I had an endoscopy and they did a biopsy saying it was negative for celiac - but I had been on a gluten free diet for years. Now, I asked my doctor if I can start the gluten challenge and get this over with. My doctor said two weeks then get the blood test. I have been having 2-3 pieces of bread daily. After four weeks of doing this, I went for the bloodwork - it came back negative for celiac. I am continuing to eat bread daily, it has now been over 6 weeks. I am not able to get an endoscopy. Please, from your experience how long really must I eat bread daily to ensure I do not get a false negative blood test for celiac? I have read up to 12 weeks. One doctor advised this is foolish to even do this gluten challenge as I am damaging my body. My other doctor said 2 weeks eat it, but it showed negative. But with my recent continuous lowering of bone density I personally need to rule celiac out.   Thank you VERY much for your help, I truly appreciate it!!
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    • Scott Adams
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      By Scott Adams · Posted

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