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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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    • You are right, the tests could be invalid.   All the celiac tests require you to be on a gluten-containing diet.  It is up to you to decide if you want to go gluten free.  You can do it.  Believe me, I know.  Hubby is not officially diagnosed.  He went gluten-free 15 years ago, based on the rather poor advice from my allergist and his GP.  It worked though.  But he would be the first to tell you that I have had way more support in terms of family and medical.    We think he has it.  Both of our families are riddled with autoimmine disorders.  I am the first to be diagnosed.   My Aunt went gluten free per the advice of her Chiropractor.  Her other doctors never suspected celiac disease.  The diet obviously worked for her.  Her daughter (my cousin) is a nurse.  She had an endoscopy but they did not check for celiac disease.  She chose to go gluten-free too since it worked for her mom.  Both will not do a gluten challenge.  However, my diagnosis has helped them get proper medical treatment.  My Aunt is very active in a celiac support group.    Now everyone in my family knows about celiac disease.  My own niece was just diagnosed with Crohn's, but her GI did test and will continue to test her for celiac disease.  You can develop additional autoimmune disorders at any time.   So far, a few other members have been tested.  No one else had had a celiac disease diagnosis yet.  Time will tell.  If I can save someone from the misery of struggling to get a diagnosis, then I can feel good.   Now, an official diagnosis will help you adhere to the diet .  You can get follow-up care.  Get checked for other things like SIBO, H. Pylori and cancer.  But ultimately, it is up to you.   Whatever you decided to do, please consider a family health history chart.  You might someday help a grandchild.   The stool tests?  In all my research, leading celiac experts do not recommend them.  http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/  
    • The procedure is a breeze. You will go in, be sedated and go to sleep for a short nap and then it's over. Some people will have a bit of a sore throat but not everyone does. For me the hardest part of the endo was not being able to drink coffee when I got up. You seem to have been back on gluten for long enough to have the test but as CLady said there is a good chance your blood work may be negative. In your case you may want to continue eating gluten after the biopsy at least until you get your blood results. If they are negative consider going a bit longer and getting them redone.
    • I think the gene tests are accurate.  Not sure if thier interpretation of them is.   If you actually think have Celiac, you need to know that.  You  need to know how careful you must be.  You need a diagnosis to get gluten-free food in hospitals or nursing homes (if you can find one that does gluten-free food).  Because thsese "stool tests" are not medically accepted, it is unlikely that a real medical facility will consider you to have Celiac.   http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/
    • Why would your doctor order an endoscopy and check for celiac disease, but not order a celiac panel?  Had you been gluten free already?  
    • Thanks cyclinglady ... just wondering, do most of the people on this forum believe the Enterolab stool / gene testing to be non-trustworthy? Or are you just recommending a diagnosis from my MD so that she is also treating me with full belief/knowledge of my condition? I've been gluten free now for 2 weeks - by the time I get in to my doctor, she orders the bloodwork and I get to a lab it could be another 2 weeks before the bloodwork is done. From what I understand, just a month of gluten free eating could skew the results of the blood test. Supposedly, the stool tests are much more accurate. I hate to go backwards and start eating gluten again just so I can have a blood test done that may or may not substantiate the results of the stool / gene testing. I'm so confused ...
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