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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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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Going gluten free may be beneficial if you're among the roughly 10 percent of people who suffer from celiac disease, a genetic immune disorder, ... View the full article
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