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Kujda

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Kujda Rookie
Kujda
Posted

We are in the final stages of adoption with our son Abraham. Of course because he was in states custody all his health issues have to be worked out and there are definitely some! Received call today that our GI appointment is Aug 3rd. They will neither confirm nor deny that he has celiac or gluten allergy until more tests. He also suffers from seizures and we are going for an EEG in july. SOmetimes I feel as if our lives revolve around doctors appointments. Now they want ot test him for cystic fibrosis and I can't say no because we are mandated by the state that we follow all recomendations or it could put the finalization of our adoption in jeopardy. I know in my heart it is a gluten allergy but of course they need to poke and prod my son for an official diagnosis. He has been gluten free for 3 months and virtually all symptoms stopped except for when he accidentally gets glutened---i am still learning.

Has anyone had any experience with this and can they give a diagnosis based on diet change and results from that? They are talking about putting him back on gluten and doing another set of blood testsand abiopsy. This is going to break my heart. I feel like people don't believe me or think I am making it up. Besides everyone here I have never met anyone who understands what my family is going through.

Thanks for all the info and support! This has been and continues to be a WILD RIDE!!!!

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Guhlia Rising Star
Guhlia
Posted

Celiac Disease can cause seizures. It can also cause CF type symptoms: persistent diarrhea, bulky, foul smelling and greasy stools, pale stools, poor growth, abdominal swelling, gassiness, vomiting, dehydration, frequent respiratory infections, abdominal pain and discomfort, poor appetite, and malnutrition. I'm sure there are other symptoms that I'm missing. It's actually probably a good thing they're taking CF into account. Better that it be ruled out now, rather than a big surprise later. I hope that doesn't sound like I'm not being supportive. I just think I'd rather know up front about those things. Plus, the sweat test is a relatively easy test. No where near as invasive as the biopsy for Celiac. :) We all know how fun that is.

Have his seizures stopped since going on the gluten free diet? If so, perhaps you can point that out to the doctors. You may also want to take in some literature on Celiac and seizures. Some doctors just never get it. Are you allowed to choose what doctor you take him to? If so, I would research doctors in your area and surrounding areas to try to find one that specializes in Celiac.

I hope things go quickly for you and Abraham. Good luck!

rinne Apprentice
rinne
Posted

Sorry I can't be of any help, I just wanted to wish you and your family well. :)

Kujda Rookie
Kujda
Posted
  • Author
Celiac Disease can cause seizures. It can also cause CF type symptoms: persistent diarrhea, bulky, foul smelling and greasy stools, pale stools, poor growth, abdominal swelling, gassiness, vomiting, dehydration, frequent respiratory infections, abdominal pain and discomfort, poor appetite, and malnutrition. I'm sure there are other symptoms that I'm missing. It's actually probably a good thing they're taking CF into account. Better that it be ruled out now, rather than a big surprise later. I hope that doesn't sound like I'm not being supportive. I just think I'd rather know up front about those things. Plus, the sweat test is a relatively easy test. No where near as invasive as the biopsy for Celiac. :) We all know how fun that is.

Have his seizures stopped since going on the gluten free diet? If so, perhaps you can point that out to the doctors. You may also want to take in some literature on Celiac and seizures. Some doctors just never get it. Are you allowed to choose what doctor you take him to? If so, I would research doctors in your area and surrounding areas to try to find one that specializes in Celiac.

I hope things go quickly for you and Abraham. Good luck!

Thanks! We do not get to pick our doctor. Our peds has to refer us. We are going to see a GI at Vanderbilt- Dr Martinez. Of course if you know of anyone that specializes in this disease I would love a name and see if we could get a referral to them. Thanks so much and I would be lost without everyone here!

Kristin

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    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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