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StacyLynch

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Everything posted by StacyLynch

  1. StacyLynch
    Like I said, im really only a week or so EVER hearing about this. If the labs won't be accurate due to me keeping him off of gluten I will go with advice from the allergist. I hope they don't want to "TEST" the calm waters so to speak with gluten. The seizures cluster was SOOOO bad over a week ago, i'm terrified. He has had cluster seizures for 20 years...
  2. StacyLynch
    He had the IVIG 10 years ago, only for 4 weeks total. The neuro was very interested in what is going on. She almost ordered the labs but I got the approval today for allergist and we have an appointment next Tuesday. She decided to hold off and have the specialist do it, also her insurance code sometimes if it's not neurology related it will be denied. Guess...
  3. StacyLynch
    We see neuro today, just happens to be a regular follow up appointment. I'm bring her his labs showing the IGa issues and dx of Iga deficieny. I really hope she does not fight me on getting him checked for Celiac. Worst case she says no and we wait for allergists insurance approval (any day now) and im sure they will do it and food intoerences test/allergie...
  4. StacyLynch
    Jagg, I am REALLY new to this. I never heard of Celiac until maybe 5-6 days ago. My son may not even have it. The only proof I have to give the primary care and neuro is IGA deficiency on labs and those are new. 20 years of uncontrolled epilepsy. I have read that even if he tests negative for Celiac he might still be gluten sensitive. I heard there is no...
  5. StacyLynch
    Laura, besides almost daily seizures, he is NEVER sick. I can't remember the last time he was actually SICK. What the doctor said, regarding the low IgA serum, and other dx is that its leading towards leaking gut. I don't know if other food intolerance besides gluten can cause that. He said leaky gut can cause inflammation in the blood stream and in turn...
  6. StacyLynch
    Lauratx immunodeficiency, can that be due to leaky gut?
  7. StacyLynch
    Yes, I have the IGg subclass labs. They all seem in rage. All I really know is IgA Selective Deficiency is a diagnosis and food intolerance. I just stumbled on this room. This could be a milk allergy for all I know. That being said, he has had uncontrolled seizure for 20 years. I would think that a milk, nut, egg or any major food allergy would of killed...
  8. StacyLynch
    I have made a couple posts but left out a issue we deal with a few times a month for the past 10 years at least. He has mouth ulcers. So bad his speech is altered due to the pain. Can that be related to gluten? I have not heard of Celiac until the past 3-4 days so bare with me. Diagnosis 1) 345.9 Seizure 2) 279.9 Immune Mechanism Unspecified Disorders...
  9. StacyLynch
    I actually printed out the two links you sent me (BELOW) last night. We have been lucky that the Drs. have always approved my lab requests even thought we have never had a answer. They have always seen my frustration. I have 6 children and their l lives are altered so much due to this refractory epilepsy. They are trooper t hough. Open Original Shared...
  10. StacyLynch
    Thank you Murphy. Yes, 20 years, 26 failed meds, 2 brain surgeries, keto diet, IVIG, ACTS, NOTHING helped. We have NEVER going gluten free until a few days ago. I appreciate some of you saying keep him eating gluten but this past week he went into status seizures for 3 days. It is almost like i'm afraid to start gluten if they might be a triggering factor...
  11. StacyLynch
    Yes, there are many children who have finally been seizure free after going gluten free, even being negative for celiac. Do you know if a neurologist can order a celiac panel? Do you know if being off gluten for only 5 days would alter the test? Yes, he has had many MRI's I never thought to ask about Celiac.
  12. StacyLynch
    Thank you for the info. We actually see his neurologist on Tuesday, way before an allergist approval will be done. I am going to bring her the lab results from the primary care showing the diagnosis below. 2) 279.9 Immune Mechanism Unspecified Disorders 3) 579.8 Food Intolerances 4) 279.01 IgA Selective Deficiency Then I will ask to be tested...
  13. StacyLynch
    I am so confused. He already had the labs below done, and we have the results IgG with 4 subclasses 1,2,3 & 4 Cpt code: 82784, 82787 x 4 L Corp : IgA with 2 subclasses 82784, 82787 x2 IgG w/subs: 209601 IgD ...
  14. StacyLynch
    Yes, it was just immunoglobulin G, sub class 1,2 3,4. So I know he was not checked for Celiac. I also have been reading that total serum IGA on just a regular lab test needs to be HIGH to lead towards celiac or gluten sensitivity. My sons is LOW? am I missing something?
  15. StacyLynch
    Panel? They did the panel and got this. I am looking at the labs now and there are number for immunoglobulin G, sub class 1,2 3,4 whatever that means. The primary care wanted to hand it over to an allergist. He also has very low serotonin and dopamine on the labs. Diagnosis 1) 345.9 Seizure 2) 279.9 Immune Mechanism Unspecified Disorders 3) 5...
  16. StacyLynch
    We are waiting for approval to a allergist. My son has daily seizures, and he had a 3 day cluster this week. They were so bad he almost had to be admitted. We have recent labs below. It might not be celiac but maybe gluten sensitive or another food allergy. Its be 20 years of seizures. I know he needs to eat gluten for the testing but he has not had a seizure...
  17. StacyLynch
    He had 3 days of seizure clusters, almost had to be admitted. I bought some whole wheat top quality bread that morning before the seizures started. He had 4 pieces. I was desperately so I started the gluten free diet, and he has been seizure free for two days and his pattern well he would of normally had another seizure by now, he has them all the...
  18. StacyLynch
    My son is 23 and has had intractable epilepsy for 20 years. 26 failed meds. A new doctor did labs and it showed IGA2 subclass 11, 2 points low out of range. Iga Serum 73 low with a normal range being 81-463. Could this possibly be celiac? or gluten sensitivity? We have been referred to a allergist. The doctors diagnosis from the labs he did is. 1) 345...
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