Posted 27 January 2011 - 08:52 PM
I'm new to this, and only really have an unofficial diagnosis. As I'm a student and don't have insurance, I couldn't afford testing or the dreaded "pre-existing condition" on my record. However, my doctor felt confident that all of the problems I've been having for over 10 years were likely related to a gluten intollerance and recommended that I go on a gluten free diet. She told me that the diagnosis wouldn't really do anything for me since the treatment was the same, with or without the diagnosis.
I've been gluten free for about 6 weeks now. Before I went on the diet, I ate bread, pasta, and other gluten-containing items regularly. My symptoms included: constant intestinal cramps, going to the bathroom about 5-6 times a day, and itchy, watery blisters on my hands and ankles (which had been previously diagnosed as eczema dyshydrosis). Within 2 days of starting the diet, my body started acting normal. No pain, no running to the bathroom, and even my eczema went away (I haven't had clear hands in almost 10 years, so this was particularly amazing.)
However, I am now having a problem. Although I have ridded my entire house of anything with gluten in it, I have already had several instances where unknown cross-contamination was an issue. For example, the other day, I bought a bag of dried lentils and made some soup. I washed them before use, and there were no warnings on the bag. However, by the next day, the blisters were forming and my stomach was in knots. After calling the manufacturer and a 2 day investigation on their part, it turns out that the lentils were packaged on shared equipment with gluten containing products. It took 3 days for the intestinal problems and almost a week for the eczema to go away. It seems that the less gluten I eat, the more sensitive I become to any contamination.
So, is this normal when you go on a gluten free diet? Do you become more sensitive to lower thresholds of gluten? And if that is the case, is it really worth it? As I am still learning the rules, it seems like I have been running into this issue about once a week. Now, instead of having a consistent, mild to moderate reaction, I'm having more severe, longer lasting reactions. Has anyone else experienced this, and if so, does it get better?
Posted 27 January 2011 - 10:09 PM
i think the longer you're gluten free- the healthier your body is- and the more AWARE your immune system is of the gluten. when you and i used to eat gluten regularly- our body had been beaten down so much- that it was not always alerting us..
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx
Posted 28 January 2011 - 05:22 AM
Posted 28 January 2011 - 11:25 AM
One needs to be gluten free for them to appear, and they even are doing research on them to devise a new celiac test, as only celiacs get them. The idea is that a suspected celiac has to eat gluten free for at least a week, then back on gluten, and afterwards they just need to take some blood and look for these freshly activated T cells.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)
Posted 28 January 2011 - 11:34 AM
Posted 28 January 2011 - 03:30 PM
It's just frustrating. I've made a very conscious effort to go gluten free, but the silly things that most people wouldn't ever think about (like crumbs in the toaster) seem to get me. Every time I've had a reaction since starting the diet, I get that nagging "what if I'm wrong?" feeling, even though I can find a traceable source after the fact. I had discovered that getting rid of gluten from my diet fixed the problems on my own before even seeing the doctor, and then brought up my concerns which she agreed with. Since I don't have an "official" diagnosis, I'm always concerned that people will think I'm some sort of hypochondriac, or that I'm going out of my way to eat gluten free if that is not the real issue. I'm glad to know that I'm not just crazy.
It seems the first year is a lot of trial and error, unfortunately.
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