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Member Since 15 Sep 2008
Offline Last Active Sep 16 2009 09:42 AM

Posts I've Made

In Topic: Iga Anti-t.tg Levels Still High

13 July 2009 - 02:43 PM

Hi Everyone,

I'm in kind of the same boat---I was diagnosed in September '08; my antibodies were checked in January and were down to 39, and when they were just checked again at the end of June they were down a bit to 31, but still not "normal." It's really discouraging---I am really really careful about what I eat, so I'm hoping that it's just taking time and will keep going down to the normal range. I'm going on 11 months now since diagnosis---the whole process is much slower than I had thought it would be.

My house is not gluten free (my husband and 5-year old son aren't gluten free), but I try to be really careful--I use a different toaster, different colander, different pots for cooking pasta, etc., different cutting board. And I never put my food directly on the counter and am pretty compulsive about wiping the counters and washing my hands well after I make a sandwich for my son, etc. We do keep our dog food in the kitchen pantry---do you think that could be a problem? I usually dont' feed the dog, and if I do I wash my hands really well after I feed her.

I'm still having a fair amount of GI symptoms as well, which I guess may just be indicating that my intestines aren't well healed yet. When I was diagnosed, my doctor said that I had near total villous atrophy. On the plus side, I haven't had a migraine since I've been diagnosed, and my anxiety levels have been much lower in general......

...but not so low that I don't worry about ending up with refractory celiac, or thinking that the longer it takes my intestines to heal the more at risk I am for cancer, etc.....anyone else have the same worries?

In Topic: Recovery Timeline

07 July 2009 - 06:48 PM

Hi Everyone,

I thought I'd share my timeline so far as well......

I am a 39-year-old female, and I started having GI symptoms about 5 years ago after the birth of my son. I also have a history of anxiety/panic attacks and migraines, as well as another autoimmune disorder (ITP--a chronic low blood platelet count), which I had for about 12 years. Just when that seemed to get better, I began having all of the GI symptoms.

I was diagnosed in September '08 by a positive blood test and positive endoscopy---according to the pathologist, the damage to my intestines was pretty severe (I think it was near total villous atrophy). I have been strictly gluten free since then, and my antibodies have come down, but they are still not in the normal range, which is very discouraging. I still am having GI symptoms frequently too, although I guess it makes sense that if the autoimmune reaction is still taking place, it's not surprising that I would have symptoms. I haven't gained any weight (I'm slightly underweight), and my bloodwork showed a vitamin D deficiency. A bone scan showed that I have mild osteopenia, and I still show some signs of malabsorption (fat in the stool---sorry if that is tmi!). Ugh---I really am so careful about my diet and food prep etc. and don't think I am getting cross contaminated.

The good news is that I haven't had one single migraine since I went gluten free, and my anxiety level definitely seems lower.

But I'm just feeling discouraged that things seem to be healing so slowly. And (being the anxious person I am!), I worry that the longer the healing takes, the more risk there is of things like malignancies, etc. I know some people who felt 100% better within weeks of going gluten free, and that's just not been my experience.

I'd love to hear any of your experiences---good luck (and quick healing!) to all of you.

In Topic: Strict Gluten Free But Still Elevated Antibodies

07 July 2009 - 06:34 PM

Hello, this is my first post so i will explain my situation:

My 4 y.o daughter has celiac disease (diagnosed via elevated ttg antibody and endoscopy). We have had her on a strict gluten-free diet since nov 07 (over a year and a half); we have repeated antibody testing twice and both times the antibody levels are still high. The first time was only after she'd been gluten-free for about 3 months, so we just thought maybe it hasn't been long enough yet. But now, we recently had another try come back high again. Her doctor suggests we must "keep a closer eye on her". We are VERY careful and I just cannot imagine that we are cross contaminating her. It is hard for me to know if she gets gluten because she has never been able to "tell" me if she feels any differently. When we first started her on gluten-free she became drastically more cheerful, happy etc. But she still periodically has her temper outbursts and becomes very difficult. She also does not always have typical diarrhea when she's exposed, so I cannot monitor her that way.

Well, I also have a 2 month old who I am nursing, who I have recently figured out is both gluten and dairy sensitive through my breastmilk. I have read that although gluten doesn't pass through breastmilk, gliadin DOES, so I am going gluten free until I'm done nursing. When I started gluten-free, her fussiness improved drastically, but then I ate a lot of ice cream and realized she is dairy sensitive too. But this whole dairy thing with my 2 month old, also has me wondering about my 4y.o. If gliadin passes through our breastmilk, maybe it gets into dairy products too............When we first started gluten-free she also stayed dairy free for the recommended 30 days, possibly helping her mood?

SO, I have a few questions, wondering if anyone has input:

How long should it take for you antibody levels to come back normal after starting gluten-free?

Could her dairy intake, even though she's GLUTEN free, still be causing the antibody levels to be high? Also, causing her mood to change at times maybe.

Does anyone know if they test dairy products for gluten even if the ingredients would not necessarily lead you to believe that it contained gluten?


I'm sorry to hear about your daughter. I am certainly not an expert at all, but I just wanted to share with you that I have now been strictly gluten free since the beginning of September (after being diagnosed by blood test and endoscopy), and my antibodies are still elevated--I just got them tested a few weeks ago, and they are lower than when I was diagnosed but still not in the normal range. It's discouraging, but my doctor said that it can take some people up to a couple of years before the intestines heal and antibody levels get back to normal. Do you know what your daughter's level was both times she's been tested? Has it come down at all?

With regard to the dairy, I'm pretty sure that it wouldn't be causing the antibodies to stay elevated, even if your daughter has a lactose intolerance or a casein allergy, or just can't digest dairy because of the damage to her intestines. For what it's worth, the last time I saw my doctor, I asked her specifically whether there was anything else besides gluten that would trigger the autoimmune reaction (and therefore elevated antibodies), and she said no. But I'm obviously not a doctor, so I'm not 100% sure.

Has your daughter had a second endoscopy since her diagnosis? I'm anxious to get one done just to assess the degree of healing that (I hope) has taken place.

Sorry if this wasn't too helpful, but I do sympathize and know how frustrating this can be--and I can only imagine it's that much more so when it's your child.

Good luck!

In Topic: Creon Digestive Enzymes

24 June 2009 - 09:22 AM

My daughter's GI prescribed Creon for her and they did seem to help. She took them for about 2 months about 3 months after her diagnosis. She was having a lot of reflux at the time and it took a while to get everything under control. I had the impression from the dr that taking digestive enzymes is a short term thing for celiacs, and that they can be helpful. BTW, I bought some digestive enzymes made by Rainbow right when my daughter was first diagnosed. They are labeled wheat free but it turns out they contain gluten. I just checked recently and am happy to say she didn't use them. Recently I have had two instances of checking vitamins that were already purchased and finding out they had gluten. One was Vitamin Shoppe, no wheat on label, told by a clerk that they were gluten-free but I checked anyway. The first person said, well, gluten isn't listed so they are gluten free, which was not reassuring. He put me through to the chemist and they do, indeed, contain gluten...

THanks so much for thre reply--I hope your daughter is feeling better. I've been on them for about 5 days now, and I seem to be feeling a little better, but it may just be wishful thinking.....we'll see! Thanks also for the info about the enzymes that turned out to contain gluten---it's hidden in so many places!

In Topic: Specific Carbohydrate Diet (SCD)

15 June 2009 - 09:39 AM

Hi Everyone,

I hope you are all doing well. Jenn, welcome to the thread, and I hope you begin to feel better--in my short time here, I've gotten really great advice and support.

I had an experience over the weekend that sort of re-committed me to SCD and reminded me that we really need to listen to our bodies. I went to my GI on Friday for a check-in, and she took some blood to check my antibody level (I had it checked one other time since my diagnosis last fall--it was lower, but still not "normal"). I won't find out the results for a week or so. I told her that I was still having symptoms and that I'd been trying SCD for about a month or so.

I think she's a very good doctor, and is kind of a specialist in celiac, but I left feeling like even the "experts" don't have all the answers. She said that she knew of some people who have had good a good response on SCD but that it was very restrictive and took a big commitment to follow, and that people tend to lose weight on it and that she didn't want me to lose any more weight. She said that I probably just needed to give the gluten-free diet more time given my level of damage (almost total villous atrophy according to the endoscopy last fall). She also said that as long as I wasn't ingesting gluten, even if I did have some symptoms, it wouldn't be doing any further damage to the intestines.

So, I (stupidly) decided to take her advice and try some other foods this weekend and see how it went. In a word: BADLY. I know I did it in a stupid way, by introducing way too much too soon, but I guess I was just using the fact that a medical professional told me I could eat more things as an excuse to do so.....I had ice cream on Friday, Bob's gluten-free hot cereal (with brown sugar!) on Saturday and Sunday mornings, fresh mozzarella and roasted potatoes on Saturday night....Needless to say, by yesterday morning I felt horrible, and am now back to the intro diet to try to settle things down.

I'm convinced more than ever that SCD is what my body needs right now, but it was just discouraging to me that it just seems like there are no clear-cut answers, and that even the doctors don't always point us in the right direction. She did prescribe me some digestive enzymes (not sure they are SCD-legal, though---maybe I should just keep taking the ones from GI Pro Health?).

Sorry to write so much---just wanted to let you know that I'm very grateful for this thread....otherwise, I think I wouldn't have had the motivation to stick to this.

Michelle, I noticed that you eat the goat yogurt--I'm thinking of trying this since I had a bad reaction to the SCD yogurt I made with regular milk. Have you found it easier to digest?

Have a good week everyone!

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