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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.

Symptoms - Thinking It's Celiac
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4 posts in this topic

For years I have had GI issues, mainly diarrhea, bloating, and gas after eating. I went lactose free for awhile, but that didn't seem to clear up my intestinal issues. I must admit, I didn't know much about Celiac until recently (and still don't know a whole lot)

My symptoms became worse after being pregnant. I've been to the doctor's office more in the last year than in my entire life. My symptoms include (not sure if they're all related to Celiac or GI, but I'll list them anyway):

- Gas

- diarrhea

- bad toenails (ridges, pulling away, susceptible to fungus)

- dry/thin hair

- Infertility (IVF treatment to get pregnant)

And new symptoms since giving birth include:

- night sweats (not premenopausal, I was tested for that)

- vitamin D deficiant

- angular chelitis (cracks and rash on corners of mouth)

- UTI - bladder infections

- weight loss / muscle loss

- tingling in arms and hands

- breast pain/tenderness on my left side (mammogram was clear)

- bad tooth infection

I had been feeling like there was a new symptom daily. I am the full-time caretaker of my babies, so it's difficult to keep making dr appointments - I really just want to figure out what's going on. Friends, and even my OB have blamed a difficult pregnacy (bed-rest, pregnant with triplets), and say it probably just took a toll on my body. Some of my family members that have gone gluten free for GI issues, but to my knowledge no one has been oficially diagnosed Celiac. I decided to try it because I wasn't getting answers from doctors, and my sister claimed it helped with her sypmtoms. I am a few weeks in gluten free and notice some of my symptoms decreasing (night sweats and cracked lips mainly). I also am suspecting that my smallest daughter may have an issue as well (underweight, constipation, fussiness, and a rash on back of legs and front of elbows). since going gluten-free (3 weeks) her rashes have cleared up and her constipation is less.

In reading some posts, I see that some people suggest sticking with a gluten free diet if it's helping without diagnosis. I get that, but I feel like it's a lot of sacrificing (especially for my kids), if you don't know for sure. Now that I'm feeling better, I'm having a tough time deciding if going back on gluten to find out for sure is worth it. My sister mentioned DNA testing, and I'm wondering about pros and cons there. Sorry for the ramble, I'm just conflicted as to where to go from here.Thanks in advance!

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Well, it's been over a month of gluten free now and I've seen quite a few of my symptoms improve. I no longer get night-sweats and the rash around my lips has cleared up. Also, my GI issues have been so much better. I slipped up and was accidentally glutened when my husband and I went out for dinner. Reliving all the GI issues and having the mouth rash come back has made me think twice about doing a gluten challenge.

I'm still trying to decide what to do about my daughter (almost 2 years old) who has symptoms. Should I put her back on a gluten diet to have her tested? My husband thinks she should be tested because it is a restrictive diet for a child. She's been gluten free for over a month now, and I've seen improvements (her rash is gone, she's less fussy, and less constipated). I'm also worried thy her symptoms will be worse if she starts eating gluten again. Help!

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I'm new to the forum, so I feel conflicted about giving any advice.. However, I believe it would be good for your daughter to be tested. Whether or not it's worth her having to deal with the symptoms again, well I think yes. If she's diagnosed now, for her entire life she can know for sure that she has to avoid all glutens. If she's undiagnosed, when she's older she'll likely eat glutens thinking, "What could it hurt?" There are a lot of foods that you can eat that are gluten free naturally. Soy milks, most tofus, meat if you're into that kind of thing, certified oats, basmati rice, all fresh fruit and vegetables, some chocolates even. Being on a whole foods diet is a wonderful way to grow up in my opinion, but she may, as I said, eat gluten when she gets older when she's out with friends or at school, not knowing the damage she could be causing.

That was more a ramble than anything, but in my honest opinion? You should have her tested. Yourself, as well.. if you decide the symptoms are worth it.

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I'm new to the forum, so I feel conflicted about giving any advice.. However, I believe it would be good for your daughter to be tested. Whether or not it's worth her having to deal with the symptoms again, well I think yes. If she's diagnosed now, for her entire life she can know for sure that she has to avoid all glutens. If she's undiagnosed, when she's older she'll likely eat glutens thinking, "What could it hurt?" There are a lot of foods that you can eat that are gluten free naturally. Soy milks, most tofus, meat if you're into that kind of thing, certified oats, basmati rice, all fresh fruit and vegetables, some chocolates even. Being on a whole foods diet is a wonderful way to grow up in my opinion, but she may, as I said, eat gluten when she gets older when she's out with friends or at school, not knowing the damage she could be causing.

That was more a ramble than anything, but in my honest opinion? You should have her tested. Yourself, as well.. if you decide the symptoms are worth it.

Thanks Eternal! I appreciate your advice and opinions (newbie or not :)). I am still considering genetic testing as a starting point, and then getting her tested from there (after she turns 2), but I don't want to wait to long because I've heard symptoms can get worse the longer you're off gluten.

I agree that it's a healthy diet, but I also realize she'll have to miss out on birthday cake and other treats growing up if she is celiac. I would rather she knows for sure, I'm just worried about all her symptoms coming back. I guess a little pain now will be worth it in the long run.

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    • Thank you for your replies, everyone! It was very helpful. I don't think I am comfortable with passing the whole gluten introduction diet again and getting that rash. Or, even getting the rash on my face flared up again. It actually might be a good thing I got 'glutened' at that bd party so I could finally make connection with all the symptoms. As I thought back about my 'allergy' rashes I start wondering if it could be related to gluten all those years but no one even suspected. For example, at some point I started getting itchy rash around my knees, spreading down to ankles (front of the legs) in summer. The dermatologist and GP said it is 'sun allergy'. The usual allergic treatments helped for the itch and the patchy scales slowly healed but it flared up on the same place during the summer multiple times. The strange thing is that it never flared up when I went hiking, or walking in the sun in the city (I have extremely low vit D levels and I need to supplement, so it was no-no to stay completely covered no matter the rash...I needed my natural vit D). The rash only appeared after beach visits. At some point I started washing and drying my skin with a towel every time I went out from the sea, the rash still appeared but I was able to control it so it showed up on day 4-5 when vacation was almost over. Then, last summer after I was completely gluten and dairy free for approximately 9-10 months, and I was annoyed of washing my skin each and every time and getting those weird looks on the beach, I stopped doing it. I was prepared with medicine and creams for that rash but guess what - my 'sun allergy' was mysteriously gone. Not a single blister, not a patch of itchy skin, nothing. Another 'allergy' case of mine is that I found from my own bad experience I got very bad rash from red dyes (in food or cosmetics). If it is food it shows on my face, if it is cosmetics (soaps, perfumes)...whenever I applied it. I am now reading that people with dh should stay away from red dyes. Mere coincidence? I don't know, I am more and more suspicious I could have this DH thing going on for years, if that is DH. I am just annoyed that all the dermatologists I went to during all those years never made connection. No one even suspected. It was the usual path - cortisone creams, pills, etc. At some point cortisone creams were no longer working so they started prescribing some mixtures made in the pharmacy specifically for me with sulfur. That worked like a charm but I couldn't walk around all covered in white cream looking like a mummy (long sleeves in summer here where I live and summer = 35-38 C, is not fun). Then, I tried homeopathy....it worked like a charm but of course those rashes kept appearing and disappearing, I was only able to control the itchy skin so I don't scratch, scratch, scratch...looong, long journey! Sorry about my rant...and, one more time thank you everyone who found the time to reply and share your opinion! Much appreciated!
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