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How Are You All Doing On Your Recovery?
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4 posts in this topic

Hi Everyone,

 

I thought it might be nice to post how we're doing, especially those of us newlyl diagnosed. I haven't posted here much lately because DS and I are both well on our Gluten free way but this board was so great for me when I was first getting tested, diagnosed and dealing with symptoms that I wanted to report back. I think I've had celiac for about thirty years but it was never caught. It was only after my son started showing classic signs that I read about symptoms and realized my canker sores and infertility actually meant something. I tested positive on both blood panel and endoscopy. DS, 4, has had all the classic symptoms like small stature and finally this summer months of HORRIBLE diarrhea. But blood tests were all negative except DGP IGA and endoscopy (more than 8 samples from duodendum) was negative, reviewed by UCSD pathologist and GI and confirmed negative. Still gluten free and I tell people he has celiac's disease so they respect the diet more. Also, he has the same "low risk" DQ2 gene I have. Personally I think in ten years we'll have much better tests so we won't have to mess around with these gluten challenges and other nonsense. Clearly gluten's not for us, so the diagnosis doesn't matter as much.

 

As for me, the first few months were hard in some ways. Lots of pain, lots of D, which I hadn't had before or hadn't noticed. But I was a lot happier and remain so, higher energy, fog lifted. I also had canker sores for most of the first few months but now they seem to be gone. I had another blood test a couple weeks ago and don't recall levels but TTG IGA still high but Endo thinks that's ok . I'm starting to feel what I think is normal, but I'm not sure I would know normal! My big issue, I'm gaining weight. I was never too thin but I could always eat whatever I wanted. I'm still struggling not to do that anymore. Even though the hunger is gone that I had when malnourished, I just want to eat a box of cookies, damnit! Also my "clumsiness", which I guess was gluten brain dammage, is much improved. The other day I ran into a door and my husband asked me if I'd been glutened, he was so surprised to see me clumsy again.

 

My son is doing really well, no more D. Improved appetite. Growing like crazy. I'm not sure about total growth but at one point he grew 1/2 an inch in ten days. Therapists (occupational, he has motor delays), speech and teachers all say his attention is improved and he's talking more at school. He's definitely getting stronger and more muscular. He's also doing so well with the diet. This is a very immature, impulsive child but he's able to talk about what foods have gluten and about how they give him diarrhea. Of course he also makes recommendations to others which are pretty funny. Jane's sick? Oh, maybe she should go to her doctor so she can tell her which foods will make her feel better.

 

I know I'm very lucky, and so many of us here are suffering much worse symptoms and slower recoveries, but for our family, we are so thankful for the gluten free diet. I guess the way I see it is that I'm not unlucky to have "gotten" celiac disease. I'm so lucky to have been given a treatment. I have to cook a little more often than I'd like to. Miss some of those Trader Joes quicky dinners and takeout, but I know something about my body that is so important and I can help my little boy. So I'm very thankful.

 

Best of luck on your recoveries.

-Megan

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Thank you for dropping in and sharing your progress, Megan.  So glad you and your son are both doing well.  The newbies on the board need to hear stories like yours.  :)

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This is wonderful news Megan!

 

Thank you for updating your family's progress -- it really is great to hear from folks that are improving :)

 

PS..took me a bit longer but I am improving each day and am healthier than I was 20 years ago.

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How long was it until you started gaining weight and until your son started growing? 

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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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