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Suspecting Celiac Disease

KLH36

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KLH36 Newbie
KLH36
Posted

I am 36 yes old and I have severe stomach problems, daily headaches, some mild joint pain,and what I think is psoriasis on my head and nose. My aunt has been tested and has Celiac's. I have diarrhea almost daily, bloating, horrible painful gas, nausea,and heartburn. Also, every few months I have severe abdominal pain lasting about an hr but I am curled in a ball for that hr. I take a lot of pepto. My headaches have been diagnosed as migraines but meds don't help. I have a history of anxiety and depression and right now I'm dealing w some slight memory loss or maybe just brain fog. How much is testing? I'm miserable most days but I'm not letting it affect my life. In need of advice.

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KLH36 Newbie
KLH36
Posted
  • Author

I have also had an elevated platelet count for the past year and a half.

nvsmom Community Regular
nvsmom
Posted

I'm afraid I have no idea what testing costs, but I can tell you which tests to look into, which I really think you should - your symptoms are the same as mine were.  :(

 

Make sure you are eating gluten (1-2 slices of bread per day) in the 8-12 weeks prior to blood tests, and 4-8 weeks prior to the biopsy.

 

The tests:

  • tTG IgA and tTG IgG (tissue transglutaminase) - most common tests
  • DGP IgA and DGP IgG (deaminated gliadin peptides) - newer test, good at detecting early celiac disease
  • EMA IgA (endomysial antibody) - similar to the tTG IgA but tends to detect more advanced disease
  • total serum IgA (a control test)
  • AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests largely replaced by the DGP tests
  • endoscopic biopsy (6+ samples taken)
  • skin biopsy - if there is a dermatitis herpetiformis rash - taken from beside an active rash
  • DQ2 and or DQ8 genetic tests - these won't tell you if you have celiac disease, but will let you know if you are in the higher risk portion of the population

Good luck!

KLH36 Newbie
KLH36
Posted
  • Author

Thank you so much for the information. I suppose I should start eating bread more often for awhile.

nvsmom Community Regular
nvsmom
Posted

If you can stomach it, it will help make the tests more reliable.  Those blood tests can miss up to a quarter of all celiacs (the old AGA tests miss even more) so it is wise to make sure you are not gluten light before the test.  Good luck.

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  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
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      Headaches / Migraines and Hypoglycaemia

      Some people have difficulty processing tyrosine. Cut out the nuts and cheese and see if there's any difference. Everyone is different. This study shows that tyrosine can affect our brain with detrimental effects as we age. Neuro-Cognitive Effects of Acute Tyrosine Administration on Reactive and Proactive Response Inhibition in Healthy Older Adults ...
    2. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
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      Nuts and cheese are not particularly high in tyrosine compared to many common foods most people eat nearly every day, particularly most meats and fish. I doubt that is the issue in and of itself, though nuts and cheese (particularly aged cheeses) can be a trigger for some migraine suffers for whatever reason. https://www.myfooddata.com/articles/high-tyrosine...
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      @Sarah Grace, Thank you for the update! It's so good to hear from you! I'm glad Thiamine, B Complex and magnesium have helped you. Yes, it's important to take all three together. I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too. They are high in tyrosine, an amino acid, found also in fermented...
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      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted...
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      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan...
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    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      Some people have difficulty processing tyrosine.  Cut out the nuts and cheese and see if there's any difference.  Everyone is different. This study shows that tyrosine can affect our brain with detrimental effects as we age. Neuro-Cognitive Effects of Acute Tyrosine Administration on Reactive and Proactive Response Inhibition in Healthy Older Adults https://pmc.ncbi.nlm.nih.gov/articles/PMC6084775/ "In conclusion, we show age-related effects of tyrosine administration especially on proactive, not reactive, response inhibition, accompanied by signal changes in dopamine-rich fronto-striatal brain regions. Specifically, we observed that tyrosine’s effect on brain and cognition became detrimental with increasing age, questioning the cognitive enhancing potential of tyrosine in healthy aging."
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      Nuts and cheese are not particularly high in tyrosine compared to many common foods most people eat nearly every day, particularly most meats and fish. I doubt that is the issue in and of itself, though nuts and cheese (particularly aged cheeses) can be a trigger for some migraine suffers for whatever reason. https://www.myfooddata.com/articles/high-tyrosine-foods.php
    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      @Sarah Grace,  Thank you for the update!  It's so good to hear from you!  I'm glad Thiamine, B Complex and magnesium have helped you.  Yes, it's important to take all three together.    I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too.  They are high in tyrosine, an amino acid, found also in fermented foods like sauerkraut and red wine.   I found taking Tryptophan very helpful with migraines.  Tryptophan is a precursor of serotonin and people with migraines are often low in serotonin.  (Don't take tryptophan if you're taking an SSRI.)     This recent study shows tryptophan really helps. The association between dietary tryptophan intake and migraine https://pubmed.ncbi.nlm.nih.gov/31254181/   For immediate respite from a migraine, try smiling REALLY BIG, mouth closed, tongue pressed against roof of mouth, and crinkle up your eyes like you just heard or saw the funniest thing...  This causes an endorphin release in the brain.  Usually it's the funny event, then the endorphin release and then the smile.  Smiling first makes the endorphin center think it missed something and it catches up quickly by releasing endorphins after the big crinkle eyed smile.  Must make crinkly eyes with smile or it won't work.  If you do this too frequently within a short time frame (several hours), you can deplete your endorphins, but you'll make more in a couple of hours, so no worries. Get your thyroid checked, too.  Migraines are also seen in low thyroid function (Hashimoto's or hypothyroidism).  Celiac and thyroid problems go hand in hand.   Vitamin D helps, too.  Low Vitamin D is found in migraine.   I'm so glad you're doing better.  
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted, leg pain , stomach,skin and eye issues,high blood pressure to name a few all worsen because I was a  school bus driver and few years until my immune system went to hell and was fired because of it.Im still struggling now, Im sibo positive and been told im not celiac and that I am.I have a hernia and dealing with menopause. Its exhausting and is causing depression because of non medical help. Today I saw another gastrointestinalist and he said everything im feeling doesn't add up to celiac disease since my ITg levels are normal so celiac disease is under control and it's something else. I for got I had Barrett's esophagus diagnosed in 2007 because recent doctors down played it just like my celiac disease. Im currently looking for a pcp in my area because it is affecting me personally and professionally. Im told since celiac looks under control it's IBS and I need to see a therapist to control it. Gastrointestinalist around here think only food consumption and if ITG looks normal its bit celiac disease it's something else. Is this right? This is what im being told. I want medical help but told its IBS.Im feel lost by " medical team "
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
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