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BearRJ

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BearRJ Newbie

The odd thing about this is I saw on the news I know this is going to sound horrible to most of us. It did to me when I first heard it. I'm just starting the journey to see if I have Celiac Disease. I saw a clip on the news the other night that the Gluten free diet is now the new Diet craze. Can you believe that. I'm thinking why any normal person espically one that's already healthy want to make that kind of a change. For those of us who are truly sick with celiac disease and probably a host of other illnesses is a matter of life and death. I know a bit dramatic. We don't have a choice. I guess that was the thing that bothered me the most. The people that go on the diet just because it's the new diet. When the rest of us have to go through all the testing and labs to find out our answers and sometimes we're left with more questions than answers. It kind of agrivated me when I saw it though. I wish more people would understand more about autoimmune diseases. I call it the silent killer. It kind of is when you think about it. All we can do is live one day to the next and hope that we have a good day. I never get up feeling the same way twice. I wish I did. I never get up having energy two days in a row. One day I might get up feeling good and the next day I feel lousy. Its all connected in the autoimmune world. I have read that if you have one autoimmune disease that really opens the door for others to appear. I have 3 autoimmune diseases and I'm only 37. It all started with Thyroid problems(hypo) and it's been a bumpy ride ever since to say the least.

anyway, I do wish everyone the best of luck. If we don't fight for our health and a good quality of life no one else is going to do that for us. By the way how long should I expect to wait for my lab results. I'm so anxious. I want to get this ball rollin. I go for a colonoscopy after the first of the year. I know what a way to start the new year, but it was the soonest I could get a 7:30a.m. appointment.

So out of curiousity how many autoimmune diseases do you have?

Hashimoto's Disease

Raynaud's Disease

ITP

Hypothyroidism


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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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