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Who Do I Call?

clhsc

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clhsc Apprentice
clhsc
Posted

Here's the story... I had dropped down about 25 pounds in 4 months, so I went to my family doctor who in turn tested for everything under the sun from my thyroid to leukemia to diabetes, etc. Anyways, after three weeks of having some form of blood test about every other day I decided to just quit going (I wasn't getting anywhere). Well, all of my test came back fine and she attributed it to my generalized anxiety disorder and the Adderall for ADD that I was taking. So, I went off the Adderall to try to gain back my appetite. Nothing happened and I continued to lose weight.

My mom read an article about celiac disease and many of the symptoms seemed to match up with mine. I went on a gluten free diet and felt better. My weight went up five pounds and stabilized. My family doctor swears up and down that you can't develop celiac disease as an adult. I read that you could develop it after trauma to the abdomen. I had a laproscopy two summers ago and that's when my symptoms started (don't know if that's related). I tried to eat some bread one day and got really sick. So I went back gluten free.

However, lately I have been having night sweats and breaking out on my arms when I am accidentally glutened. My mom thinks I need to go to the doctor so that I don't have to do this alone and have some additional guidance. She also (and so do I) would like to make sure that this is definitely what is wrong. Now, who do I call?

Thanks for all of your help!

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jayhawkmom Enthusiast
jayhawkmom
Posted

Well, I"m 36 and was just dx a few months ago. Celiac can be triggered by any number of things. While you may have had it your entire life, it may not manifest itself until after some sort of trauma, life stage change, or other health issue. Mine was triggered by my 3rd pregnancy. I have no idea why.... it was an easy pregnancy, easy delivery....but I got sick shortly after and remained *very* sick until I learned that I was gluten intolerant. Now I'm back on the road to recovery.

I would go to a gastrointerologist. They are the ones who are better qualified to deal with GI issues. There is a wealth of information on this site about what tests need to be done (IgA, IgG, EMA, tTg, etc) and different labs that process the tests. If I had another minute, I'd provide links...but I've gotta get the kids out the door for school. Hopefully someone will be able to help you with that. =)

If not... I'll post more when I get back!

Corkdarrr Enthusiast
Corkdarrr
Posted

I would do a search for a doctor or a GI in your area who is knowlegable about celiac - obviously don't go back to whoever you WERE seeing.

Or consider Enterolab as an option for testing. My blood tests came back negative because I'd already been gluten-free. Since beginning the diet, I've never considered going to a GI because I know they won't find anything and I'm not willing to do a gluten challenge just so that they have a chance to. Kind of like reaching around your a$$ to scratch your elbow...

But I was definately in a bit of denial and it helped to have something definitive to look at. My Enterolab results paired with any of my accidental glutenings (or every now and then when I have a severe lapse in judgement) is all the proof I need.

Courtney

Guhlia Rising Star
Guhlia
Posted

I totally agree with the Enterolab suggestion. They test for gluten intolerance, not specifically for Celiac Disease, though they can do a genetic test to tell you if you have the celiac disease genes and which ones. However, it seems to me that you already have your answer. If you're breaking out while eating gluten, the easiest way to be tested would be to have the rash tested to see if it's DH. If the rash is DH, then you absolutely have Celiac Disease. Hope that makes sense. If the rash isn't DH, then I would test for celiac disease/gluten intolerance through Enterolab. It's a bit pricey if your insurance won't cover it, but it tests for intolerances, genetics, etc.

kbtoyssni Contributor
kbtoyssni
Posted
Here's the story... I had dropped down about 25 pounds in 4 months, so I went to my family doctor who in turn tested for everything under the sun from my thyroid to leukemia to diabetes, etc. Anyways, after three weeks of having some form of blood test about every other day I decided to just quit going (I wasn't getting anywhere). Well, all of my test came back fine and she attributed it to my generalized anxiety disorder and the Adderall for ADD that I was taking. So, I went off the Adderall to try to gain back my appetite. Nothing happened and I continued to lose weight.

My mom read an article about celiac disease and many of the symptoms seemed to match up with mine. I went on a gluten free diet and felt better. My weight went up five pounds and stabilized. My family doctor swears up and down that you can't develop celiac disease as an adult. I read that you could develop it after trauma to the abdomen. I had a laproscopy two summers ago and that's when my symptoms started (don't know if that's related). I tried to eat some bread one day and got really sick. So I went back gluten free.

However, lately I have been having night sweats and breaking out on my arms when I am accidentally glutened. My mom thinks I need to go to the doctor so that I don't have to do this alone and have some additional guidance. She also (and so do I) would like to make sure that this is definitely what is wrong. Now, who do I call?

Thanks for all of your help!

My celiac disease was triggered by the flu. I figure it was immune system overload and I never got better. There often is a trigger for the disease and it sounds like your laproscopy could have been it.

The problem with conventional testing is that it won't come back positive it you are already gluten-free. So going to a GI again may or may not be beneficial. I am highly skeptical of doctors. I diagnosed myself and figured everything about the diet out on my own. A positive dietary response is a positive diagnosis in my mind. If you want futher testing while staying gluten-free, I think Enterolab is your only option.

If you do decide to go to a GI, I'd call and ask how many patients they have treated or diagnosed with celiac disease. There are doctors out there who "get it", but you have to search for them. My friends are always telling me I should go to the doctor, but I don't know what a doctor could do for me. I've already got my diagnosis so I feel like I know more about this than the doctors because I live it everyday.

CarlaB Enthusiast
CarlaB
Posted

If you're looking for help on the diet, you've come to the right place! Welcome! There's no better place than here for help. After spending time here, you'll know more about the gluten-free diet than most doctors and dieticians.

If you're looking for diagnosis, for a conventional diagnosis, you must be eating gluten, at least the equivalent of 4 slices of bread per day. If it makes you feel bad and you're sure of it, you can consider dietary response to be a diagnostic tool -- my doctor does!

If you don't want to get back on the gluten and you want some kind of formal diagnosis, you can go to Enterolab.

The benefit of Enterolab or dietary response is that you won't be denied insurance in the future because of a celiac diagnosis. Yes it happens. If you're sure you get sick from gluten, I'd just avoid it -- that's what my daughter does, without a formal diagnosis. I don't want her to have insurance problems following her around all her life, and she's sure gluten makes her ill. Because of me, we know she's genetically predisposed to the sensitivity.

clhsc Apprentice
clhsc
Posted
  • Author

I have an appointment on Nov. 14 with a new doctor. I have a friend who has celiac disease and she recommended him to me. I guess the reason I feel like I have to "prove" to myself that I have celiac disease/Gluten Intolerance is because no one else in my family has these problems. My mom and sister have the little bumps on their arms and my dad has IBS, but no one in my family has even heard of celiac disease until we did some research.

I guess I should call the dr. to ask him if I should continue eating gluten until my visit or stay on my regular diet.

Thanks for all the help!

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