Jump to content
  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Could It Be Something Else? On Top Of Celiac?


miss vivian

Recommended Posts

miss vivian Newbie

Hey all.

Well, I had an accident where I ate gluten last Sunday. Now it's over a week later, and I still have that old burning sensation in my upper abdomen - just like before.

I have been totally gluten-free. Since I got the call from my gastro telling me that I had this, I went off gluten, except for my mistake last week....

I was looking at my blood work - and I was diagnosed due to a high anti endomysial level. However, my IGA level was normal... I had the biopsy done 5 weeks after going gluten free - and of course, the biopsy was normal. I did the biopsy just to see what damage was done, and it was good to know that things look good in there. :)

Anyway, here's what I'm driving at....

Do you think a high anti endomysial level is the most accurate diagnostic test?

Why is my IGA level 133 - when the normal range is 75 - 310?

What else could be causing this PAIN?? I'm beginning to think maybe I have cancer.. I know that sounds terrible, but why all of this pain for no reason? UGH! Shoot me now!

I have not strayed and I will not stray. I am a gluten free girl, just frustrated tonight....

take care and thanks for reading and helping me out.. this forum is awesome!

-V


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



lizard00 Enthusiast

It takes me at least a week to get over being glutened. It's very frustrating how long the effects take to wear off in some of us. Hang in there, hopefully it will pass soon.

Here's some information regarding the testing. Your IgA number is a total number, which just shows that you create a normal amount of IgA antibodies. IgA is a part of our immune system that helps fight off colds, viruses, etc, but is also created abundantly in the small intestine. Which is why it plays an important part in celiac. They test the whole number to make sure you are not deficient, since the majority of the celiac panel is based on IgA.

(* I added the red to highlight the answer to your question)

Hope it helps!

Table 1: Serologic tests for celiac disease--pitfalls

Serology

Comment

AGA

Relatively non-specific

Anti-EMA

Highest overall sensitivity and specificity, but poor sensitivity in patients with partial villous atrophy

Anti-tTG

Sensitivity and specificity not equivalent to anti-endomysial antibody, Less sensitive in partial villous atrophy

Total IgA

Screens for IgA deficiency. Often present if IgA deficient and one of the following present: IgG AGA, IgG anti-endomysial antibody, IgG anti-tTG.

Open Original Shared Link

Lori T. Newbie
Hey all.

Well, I had an accident where I ate gluten last Sunday. Now it's over a week later, and I still have that old burning sensation in my upper abdomen - just like before.

I have been totally gluten-free. Since I got the call from my gastro telling me that I had this, I went off gluten, except for my mistake last week....

I was looking at my blood work - and I was diagnosed due to a high anti endomysial level. However, my IGA level was normal... I had the biopsy done 5 weeks after going gluten free - and of course, the biopsy was normal. I did the biopsy just to see what damage was done, and it was good to know that things look good in there. :)

Anyway, here's what I'm driving at....

Do you think a high anti endomysial level is the most accurate diagnostic test?

Why is my IGA level 133 - when the normal range is 75 - 310?

What else could be causing this PAIN?? I'm beginning to think maybe I have cancer.. I know that sounds terrible, but why all of this pain for no reason? UGH! Shoot me now!

I have not strayed and I will not stray. I am a gluten free girl, just frustrated tonight....

take care and thanks for reading and helping me out.. this forum is awesome!

-V

left a post for someone else with this advice too: get checked for liver issues and if you still have your gallbladder, that too. I do not have mine and have just found a site that helped with the pain I was having.Thought I had been glutened but it did not go away. You need a specific diet for this area of digestion. Check out the site: gallbladderattack.com. Good info that may apply to you. I think for me, I ate something that triggered the response that had gluten. But, a glutening alone will set me up for at least a weeks worth of agony regardless. It sucks I know. Going on a very light, almost clear liquid diet for a day or so speeds things up for me. Lots of water helps to move whatever I ingested out. Hope you feel better soon. Take care.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      34

      Pain in the right side of abdomen

    2. - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      34

      Pain in the right side of abdomen

    3. - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      1 Year Elimination Diet journey

    4. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      1 Year Elimination Diet journey

    5. - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      1 Year Elimination Diet journey

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,056
    • Most Online (within 30 mins)
      10,442

    Faiga
    Newest Member
    Faiga
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac disease can have neurological associations, but the better-described ones include gluten ataxia, peripheral neuropathy, headaches or migraine, seizures, cognitive symptoms, and, rarely, cerebral calcifications or white-matter changes. Some studies and case reports describe brain white-matter lesions in people with celiac disease, but these are not specific to celiac disease and can have many other explanations. A frontal lobe lesion could mean many different things depending on the exact wording of the report: a white-matter spot, inflammation, demyelination, a small old stroke, migraine-related change, infection, trauma, vascular change, seizure-related change, tumor-like lesion, artifact, or something that resolved on repeat imaging. The word “transient” usually means it changed or disappeared, which can happen with some inflammatory, seizure-related, migraine-related, vascular, or imaging-artifact situations.  Hopefully they will find nothing serious.
    • knitty kitty
      @Heatherisle, I would feel much less worried if you would insist that the doctors administer high dose thiamine hydrochloride (500mg x 3 daily) for several days, with a banana bag (all eight B vitamins, riboflavin makes it yellow like bananas).  Electrolytes may become unbalanced, so monitoring is needed as well.  Just to rule out Thiamine deficiency, high dose thiamine should be administered for several days.  If no health improvement, look for something else. The symptoms your daughter is showing are seen in Wernickes Encephalopathy caused by Thiamine deficiency.  White spots in the brain including on the frontal lobe are seen in Wernickes Encephalopathy.  Blurred vision, balance problems, changed gait (wider stance to compensate for imbalance), tingling in hands and feet, ascending neuropathy, lower back pain, kidney pain, abdominal pain are all symptoms I have experienced when I had Wernickes.  The damage becomes permanent if not corrected quickly.  Korsakoff Syndrome follows with brain damage that cannot be reversed, and death following.   Doctors are not trained in Nutrition.  Doctors are taught Wernickes Encephalopathy only happens in Alcoholism.  My doctors did not recognize Wernickes Encephalopathy because I did not drink alcohol.  If it walks like a duck... Doctors do not realize that Malabsorption from Celiac Disease can result in severe nutritional deficiency diseases, including Wernickes.  Malabsorption of Celiac Disease affects all the essential nutrients, vitamins and minerals, our bodies need to function properly.  It's rare to have a deficiency in just one vitamin.  B12 Deficiency and Thiamine deficiency go hand in hand.   I had symptoms of deficiencies in many vitamins and minerals because my Celiac Disease was still undiagnosed at that time.  They laughed when I asked to be checked for Celiac Disease.  I was overweight (high calorie malnutrition).  I didn't match their " in the box" thinking.  I didn't match their concept of the wasting away, skin and bones stereotype of Celiac Disease.  My doctors wrote me off as "depressed".  I could feel myself dying.  I trusted what I learned at university about how vitamins work inside the body.  I recognized the symptoms of Wernickes and other nutritional deficiency diseases.  At home, I took 500 mg over the counter thiamine hydrochloride and had health improvement within twenty minutes.  I continued supplementing for months, with thiamine and B vitamins and electrolytes.  I continued to have health improvements.  I did suffer some permanent brain damage.  I have permanent vision problems and optic nerve damage.  Computer screens cause migraines.  I struggle through them to help others.   Ask for Thiamine and an Erythrocyte Transketolace Activity Assay.  This test is more accurate than a blood test for Thiamine level, but both tests take time, during which time permanent damage can be done.  The World Health Organization recommends thiamine administration before test results come back in order to prevent permanent damage.   Trying thiamine hydrochloride is simple and cheap and safe and nontoxic.  If high dose thiamine doesn't work, there's no harm done.  Try thiamine supplementation if only to rule out Thiamine deficiency....while there's still time. References: Thiamine Deficiency and Brain Injury: Neuroanatomical Changes in the Wernicke-Korsakoff Syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC12535404/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Please have ears to hear.
    • Aretaeus Cappadocia
      I don't know about this. Here's how I make kasha: boil water in a pot add the kasha, stir to mix, turn heat down to a gentle simmer for ~10 min, maybe 15, until tender remove from heat and serve There are lots of variations if you wish, like adding salt and butter. One variation that is really tasty, but kind of a pain, is to mix the dry kasha with a beaten raw egg, heat the dry kasha/egg mixture in the pot for a couple of minutes (to coat the kasha and cook the egg), then add boiling water and finish like the "basic" recipe above. I seldom have the patience to do all of that, though.
    • xxnonamexx
      What's the reasoning of washing and rinsing kasha buckwheat for 12 hrs
    • Aretaeus Cappadocia
      I don't clean the kasha. It does take more than a minute but less than half an hour. However I understand the need for efficiency in the morning routine. I am not familiar with the lemon thing. Another one to consider is quinoa (I buy Kirkland, labeled gluten free). It is probably better to rinse the quinoa before cooking. I don't notice it myself but a lot of people don't like unwashed quinoa because of saponins that are removed by a rinse. All of these are reheatable if you want to make a larger amount ahead of time. Also, it may be possible to use the "overnight oats" strategy with some or all of these, but I have to say I never even thought about it until writing this response.
×
×
  • Create New...