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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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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
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      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
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      Coeliac UK Research Conference 2025

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      Thanks for sharing this!
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