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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

What More Can I Do About My Mother.
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8 posts in this topic

It would be hard to describe the whole situation. I was diagnosed celiac last May by a genetic test. The same test was so positive that it was known both of my parents have the genes for it. I told them and all my extended family of my diagnosis. I also wrote to Mom's doctor to ask him to consider this diagnosis in my mother's care.

Dad said that Mom was just not up to a diet change then. She had begun some bizarre behaviours such as expecting company when there was none. She eventually got some psychotic drugs to try to help her brain function better. She became physically weak. The other day she couldn't rise from her kitchen chair for the entire day. Eventually, they had to call an ambulance to come get her.

The doctors are not telling what is wrong my Dad says. They aren't trying to explain why she is so weak suddenly? They may release her from the hospital today if she can walk. How does something like that mysteriously change?

What can I do? What can I do?

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My mom has had some of those things. She isn't Celiac. Do you live close enough to go to the hospital and be there when the doctor comes around? Sounds like your dad either isn't telling you anything, or he isn't understanding and asking questions.

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My mom has had some of those things. She isn't Celiac. Do you live close enough to go to the hospital and be there when the doctor comes around? Sounds like your dad either isn't telling you anything, or he isn't understanding and asking questions.

I live an hour and a half away and we are now short of cars in the family. I have given the doctor my name and phone number when I told his that I have celiac.

Did your Mom ever pull out of it? Mine has been so well and she is only 71. Dad is 81.

II don't think the doctor is allowed to discuss her healthcare with me. Mom and I have vastly different ways of looking at health care.

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I don't think the doctor is allowed to discuss her healthcare with me.

Even if he can not talk, he can listen.

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My mom has a lot of issues.

It sounds like your Dad doesn't want you involved. Sorry. there isn't much you can do unless you have evidence he is not caring for her appropriately. Then you could report him for elder abuse.

Do you have any siblings that know what is going on?

Just remember- just because someone has a gene or 2 that are associated with Celiac, it doesn't mean they will have Celiac. The gene has to be "turned on" to make Celiac.

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It might be worthwhile to check the drugs she is on for side affects. Some drugs can have very strong side affects.

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My mom has a lot of issues.

It sounds like your Dad doesn't want you involved. Sorry. there isn't much you can do unless you have evidence he is not caring for her appropriately. Then you could report him for elder abuse.

Do you have any siblings that know what is going on?

Just remember- just because someone has a gene or 2 that are associated with Celiac, it doesn't mean they will have Celiac. The gene has to be "turned on" to make Celiac.

My dad is a gem. My siblings are all involved. I just found out that the weakness was probably a side effect of a drug she went on two months back.

I will be sure to leave a note for the doctor if I have further questions.

Thanks,

Diana

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I think it is difficult for others to see what we have had to go through and do not want to admit that they might have a similiar problem. Both my parents and my brother have auto immune disorders which are associated with celiac diease. I too have suggested that they get tested just to be certain. Of course they will not. I really do hope your family get tested, but sometimes all we can do is be supportive.

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    • Good advice Ennis!  I would add baking and freezing some gluten-free cupcakes to have on hand, so that she is never left out.  Be sure to read our Newbie 101 tips under the coping section of the forum.  Cross contamination is a big issue,  If the house is not gluten free, make sure everyone is in board with kitchen procedures.   Hopefully, your GI talked about the fact that this AI issue is genetic.   Get tested (and your TD1 child).  TD1 is strongly linked to celiac disease.  About 10% of TD1's develop celiac disease and vice versa.  Get tested even if you do not display any symptoms.    http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/
    • What does weak mean?  Like you squat down and and you can not get back up?  Or are you fatigued?  When you said blood panel, was your thyroid tested?  Antibodies for thyroid should be checked if you have celiac.  So many of us have thyroid issues.  
    • We are not doctors, but based on the results you provided, you tested negative on the celiac screening test.  You could ask for the entire celiac blood panel to help rule out celiac disease.  The other IgA that was high?  It normally is given as a control test for the TTG IgA test (meaning if the celiac test results are valid).  In your case, the TTG IgA test works.  Outside of celiac disease, you might have some infection.  Discuss this with your doctor as he has access to your entire medical file.  I would not worry about it though over the weekend!  
    • See: http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/ Take a copy of that with you or mail it to the doc. How many endoscopic biopsies did they take? Those with dh tend to have patchier damage than "normal" celiacs.
    • Ironictruth, I think that is a very insightful thought. since different antibodies present for different body systems all the ways gluten affects the body is still not well understood. Here is a case of presumably someone who had the gut damage of a celiac but also had neurological damage. http://www.nature.com/nrneurol/journal/v3/n10/full/ncpneuro0631.html entitled "A case of celiac disease mimicking amyotrophic lateral sclerosis" so it has happened in the literal but since this is not well understood people don't make the connection today. I would also point you to this hindawi article on the "Lesson's learned from Pellagra" but I am afraid we haven' learn't yet. https://www.hindawi.com/journals/cggr/2012/302875/ notice specially the 2.1 section clinical feature of pellagra and all the neurological symptom's once associated with a Pellagra patient. quoting "The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants." which tells me doctor's don't recognize pellagra today when they see it because they haven't seen it in 75+ years. ***this is not medical advice but read the hindawi journal on lesson's learned and I think you will see yourself in their many descriptions of all the way Pellagra presents itself to doctor's and patients still suffering today and you can see why it (like celiac) is hard to pin down today because it presents in so many ways it can be soo overwhelming and since vitamins are not a focus anymore today (especially b-vitamins) that today I believe we are doomed to repeat history's lessons unless the current generation learns again all the ways pellagra presents itself today. good luck on your continued journey. posterboy by the grace of God,  
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