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How Are You All Doing On Your Recovery?
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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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    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
    • I think that we have to remember that celiacs often develop intolerances due to our  damaged guts.  Our guts do not ncessarily heal either (usually adults) for  a variety of reasons even if their symptoms improve (see links below).   Nuts are just plain hard to digest.   I can not tolerate almonds, but can handle walnuts and cashews in small amounts.  I can eat peanuts too, but resort to Peanutbutter after a Glutening as it is easier to digest (maybe I have to learn to chew better!  😀)  My nut symptoms have  nothing to do with gluten as I have purchased certified gluten-free nuts and suffered with the same symptoms.  .   https://www.verywell.com/celiac-disease-when-will-your-small-intestine-recover-562341 http://www.cureceliacdisease.org/treatment/ http://www.ncbi.nlm.nih.gov/pubmed/23936873 i call the manufacturer when I suspect the manufacturer is sharing the line or if I just want to know.  I bought some Black English walnuts and called the company.  Those are the only nuts they process and they do not have any flavored nuts.   if you really want to test your theory out, buy some nuts from Nuts.com (certified gluten-free).   See if you get a reaction or ask your GI to retest your antibodies (which should be done annually anyway).   I just hate to have Planters get a bum rap when you do not really know for sure.......😥    
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