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Hello. I was just diagnosed as possibley having celiace disease. I'm not sure what do i do about it and what are some of the problems associated with this disease, what symptoms?

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Hi has anybody experience severe bruising and anemia with celiac disease I also get tired alot.

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Fatigue is the #1 sympton of celiac disease. Anemia is right up there too. If your villi are damaged then you are not absorbing all the iron and other supplements.

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Chasefamily, Hi and welcome. :) The first thing to do when you are diagnosed with Celiac is immediately begin a gluten-free diet and stick to it for the rest of your life. That is the only way the symptoms will stop and your body will begin to heal. WHen and how were you diagnosed? Have you started a gluten-free diet yet? It is hard in the beginning but it does get easier, I promise!

Most people have the common GI probs such as:

diarrhea

nausea

weight loss

abdominal pain

cramps

etc...

and yes anemia can be a symptom too for some people. I personally do not have a problem with anemia but I have always bruised easily. Maybe someone else will be along soon to answer your questions.

Here is a link about Celiac symptoms:

Symptoms of Celiac

Here are some other helpful links:

Safe & Forbidden Food & Ingredient Lists for Gluten-Free Diet

Info on Celiac

http://www.glutenfreedrugs.com/

This is a post that one of our members started (thank you Jessica), which has a TON of links with great information, I thought you may want to look through them!

Info link

I hope this helps you :rolleyes:

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thanks for the quick reply. I have been to several doctors over the last few years for multiple problems. I see a hemotologists regulary for Essential thrombytosis and low ferritin level, plus severe bruising, I have been going ther since 1997, I was having bleeding problems and had to have emergency hysterectomy because I wouldn;t stop bleeding ever since that I have had problems with my iron count and have been on and off of iron medication since 97 but still bruise alot and always tired, I reciently went to a GI doctor for acid reflux problems and food coming back into my esophagus and he is the one who thought I might have celiac disease after reading all of my medical info. I am scheduled to have endoscopy the end of this moneth but he did not tell me to start a gluten free diet yet?

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Hi Chase family and welcome!

I would advise you not to go gluten free until the

Endoscopy is done. If you start to eat gluten

free now it will affect your biopsy and blood

test. Have you had the blood test yet? My

GI doc did a celiac panel, I tested Neg for

the gene but positive for the IgA (75). I was

retested in 6 mos, my level is still somewhat

elevated. My doc said to try foods again one

by one to see how I react, I did this but

found I still cannot tolerate wheat or dairy.

My advice to you is to keep a journal of

what you consume as you will probably have

some "gluten accidents" from time to time.

Try to learn as much as you can about

this disease because my doc told me to

avoid wheat, rye, oats, and distilled vinegar!(DUH)

Get in the habit of readin all the labels, at first

it seems overwhelming. Try to come to this website

every day. There are plenty of people ready

to help you. Hope this helps.

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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