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Old 04-24-2009, 06:57 AM #11
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Quote:
Originally Posted by bobbyj View Post
Thanks for the additional info, Cara. No, I don't have thyroid problems according to my test results (TSH, T3 and T4 were fine).

Thanks once more.
always get copies of all your lab work, and compare over time.
i would be interested in your TSH....some docs/labs are still using old standards.....if it is over 3.5 it is now considered abnormal
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Old 05-11-2009, 08:32 PM #12
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Hi, I have the same syptoms and the same elevated Gliadin iGg antibodies, without elevation of any others. My b12 is fine.

My iGg was 180, where the upper limit was 70, not sure what units were used, but over twice the upper limit for a strong positive result.

My memeory is getting very bad, often forgeting I just made a coffee and making another one, and another one untill i end up with 3 coffees around the house...

I want to get tested for candida, as have heard this can cause these symptoms as well as a leaky gut and immune reactions to foods.

Have been off gluten for 3 weeks now and can not say i notice an improvement.
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Old 05-12-2009, 02:05 AM #13
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what was the B12.....if you are in the USA the limits are too low....many persons are symptomatic when their docs have said there is no problem....most persons find a very steep learning curving with the gluten free diet.....so unless you are eating straight from your garden you may be getting glutened and not know it....lots of whole foods and label reading...and some persons take longer to respond....you had to "work your way up to" that high reading, it will take time to come down....keep a diary of sx.....you may have improved, and not realized it....good luck
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Old 05-12-2009, 09:57 PM #14
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Thanks for the response.

My latest b12 was 700-odd, that was after b-vit supplements. Was 350-ish before then so obviously had some room to absorb more.

Yes I agree with the steep learning curve. Before the high iGg result my gluten free diet was mainly avoiding pure gluten foods like bread, pasta etc, thinking a small amount won't hurt me. Am now aware of contamination even from using a toaster etc, so am going to be a lot more strict from now on and hopefully see some big improvements.
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Old 05-14-2009, 03:31 PM #15
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John, you are doing the right things!

Your B12 level of 350 before supplementing is certainly in the suspicious range, so keep on taking the B12 (preferably 1000-2000mcg daily of methylcobalamin) daily... forever. Be sure you are taking extra B-complex, too. Omega 3's can be helpful. Also, you might want to check on your zinc/copper levels. "no zinc - no think" You can overdo on zinc, so check with your doctor, or keep it to 25mg daily.

It can take a long time to recover from some of the cognitive effects of a B12 deficiency. My memory was very very bad at my worst, which came three years after the onset of my early symptoms... with a B12 level of "low normal" 294. I couldn't think, period. I had trouble with following and participating in conversations, etc. I did all sorts of brainless things. Even though they say most improvement comes within 6-12 months, I know I continued to improve for years.... especially with the cognitive issues. I had brain fog, memory problems, word finding problems, concentration problems, etc., and all are much, much better. Now, I can probably blame it on normal aging.

Also, try to force yourself to USE your brain... actively work on memory tasks. I know it is hard work, but it helps. Unfortunately, I didn't think to do that until several years after the fact. Now I play games on a Nintendo DS, like BrainAge, and Word games. Math problems, crossword puzzles, "concentration" type card games to remember matches... anything that forces you to use it... so you don't lose it. I've been amazed by how much quicker and better I can think when I'm playing those BrainAge games.

Gluten free needs to be 100% strict to be effective. A little bit does hurt, and may prevent you from seeing any improvement. So, hopefully getting more stingent about that will pay off. Healing nerves and the brain is slow business; brain fog symptoms may clear a little sooner.... but still, it could take 6-12 months to see improvement. It may come sooner.

Many people have the same problems with casein... or other foods. There may be others you need to remove.

Not a bad idea to get checked out for candida. It often goes hand in hand. A gluten free, casein free, sugar free diet goes a long way to snuff it out, but you may need an anti-fungal if it is a problem.

Good luck. Stick with it!
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Old 05-14-2009, 04:07 PM #16
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Have you been checked out for thyroid disease, including thyroid related antibodies? Because that is the other time I had major cognitive problems. These things often all go together.
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Old 05-14-2009, 08:45 PM #17
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Thanks for the reply. I had some thyroid levels tested, not sure if it was all the tests though. Were normal though.
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Old 05-18-2009, 10:35 PM #18
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Have been told my results (very high IgG) indicate celiac, and have been booked for a biopsy.

Have never had any great digestive problems etc, so will be supprised if the biopsy results indicate celiac.

Am trying a Candida diet, and anti-fungal pills (kolorex), as think my leaky gut might be caused by candida. I used to drink 3-4 glasses of milk a day (high sugar), am have been on antibiotics approx 10 times in last 3 years, including IV during glandular fever, which all increases candida growth.
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Old 05-19-2009, 06:13 AM #19
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Not all celiac's have severe symptoms, but, that doesn't mean damage is not being done. Some celiac's are diagnosed accidentally when being tested for something else.

I have not decided which is worse, being so sick you search for a reason, or being that sick and not knowing it. Probably not knowing it is worse.
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We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!
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Old 05-20-2009, 10:24 AM #20
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Quote:
Have never had any great digestive problems etc, so will be supprised if the biopsy results indicate celiac.
I wish I could track down some actual stats for you (can't seem to find any), but many (half to more) with celiac diseaes do not show digestive symptoms. They may be completely asymptomatic or have 'atypical' symptoms that don't necessarily set off flags for celiac disease.

The truth is that "classic or typical" symptoms of celiac disease are not the norm! In the not too distant past, only the worst of the worst were ever diagnosed, often near death. Newer antibody tests developed over the last ten/fifteen years have really helped the diagnostic process and many more are being diagnosed. Still, they say, something like 95% remain undiagnosed .

It will be interesting to see what shows up on biopsy. Be sure to keep eating gluten until then... if a biopsy is scheduled. You wouldn't want to 'heal' prematurely and then have to question the biopsy results. No matter what the biopsy says, though, your antibody tests show significant gluten sensitivity...so ultimately, gluten free no matter what seems to be the best bet.
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