nasalady
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About Me
Scientist by profession (astronomer); love music!; family keeps me busy....we have two four-year-olds at the moment!
I have multiple autoimmune diseases, including Hashimoto's thyroiditis, psoriasis, asthma, and now (recently diagnosed) autoimmune hepatitis, rheumatoid arthritis, lupus, and fibromyalgia. The last four were likely triggered by Lyme disease (I was dx with Lyme Jan 2010).
There are many other serious autoimmune issues in my family, including lupus, Graves disease, and celiac disease.
In August 2008 I decided to try going gluten free to see if it would help (it did; I felt MUCH better)....but then went back on gluten for a few months to prepare for bloodwork and biopsy for celiac disease and experienced MAJOR symptoms including canker sores all over my mouth, migraines, and lots of gastric problems.
Bloodwork negative
Biopsy negative
HLA DQ8
Doctor believes my test results are negative because of the high dosages of prednisone and Imuran taken for autoimmune hepatitis. Diagnosed by dietary response, genetics, predisposition to developing autoimmune diseases, and family history of celiac disease.
Gluten free since 25 Nov 2008
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ARCHIVED Can Medication Affect Test Results? Labs?
nasalady replied to kelliac's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Hi kelliac, My gastroenterologist gave me a clinical diagnosis of celiac disease even though my tests were negative (blood work and biopsy). I have the HLA DQ8 marker, reacted very strongly to a gluten challenge, and have family members with celiac disease, including 3 of my 5 grandchildren. He said that my prednisone and Imuran would suppress antibody... -
ARCHIVED Feeling Lost - Can You Help?
nasalady replied to lostinwa's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I think that you already have a good idea there....get the blood test done but be prepared for a possible false negative. One of the best resources for how clean your kitchen should be and simple things to eat for the first couple of weeks that I know of is the following post on Karina's blog: Open Original Shared Link Take it easy....identify... -
ARCHIVED Gluten Sensitivity Gene...years Of Pain?
nasalady replied to IrishEyes's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Hi Irisheyes, As previous posters have said, the short answer is YES. Celiac disease is a very complex disorder; most people think it only involves the GI tract, but researchers have found that celiac causes the body to produce antibodies against bone, skin, and even the brain! Some or hopefully all of your symptoms may (eventually) go away on... -
ARCHIVED Gluten Sensitivity Gene...years Of Pain?
nasalady replied to IrishEyes's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Your doctor is wrong. You have to eat LOTS of gluten until after all tests are done (including bloodwork and intestinal biopsy) if you want accurate results. The more gluten the better! You can go on the gluten free diet the day after testing is done....you don't have to wait for the results! -
Hi Nutralady, Celiac disease is closely correlated with MANY other autoimmune diseases, particularly the thyroid ones (Hashimoto's and Graves Disease). We have all of the above in our family, plus lupus, Addison's disease, rheumatoid arthritis, autoimmune hepatitis....you name it, I'm sure I can find a cousin of mine who has it. In my case, it's my...
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ARCHIVED Not Sure If This Is A Gluten Reaction
nasalady replied to hpymomof3's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
It can take me anywhere from 8 to 72 hours to react to gluten. Everyone is different. Some people react VERY quickly (minutes), others don't. If it were my daughter, I would assume that the diarrhea was a reaction to the gluten; that IS the classic reaction, after all. And I would believe her physical reactions to a food over anything told to me by... -
ARCHIVED What You Don'T Know About Gluten Can Kill You!
nasalady posted a topic in Publications & Publicity
Great article in the Huffington Post about the evils of gluten: Open Original Shared Link JoAnn -
ARCHIVED Genetic Testing
nasalady replied to StephanieL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Well, no, this is not true. Although it is rare, there are actually people here on this board who have tested negative for the two "accepted" celiac genetic markers, HLA DQ2 and HLA DQ8, and yet they have celiac disease. My granddaughter Carly has biopsy-proven celiac disease but does not have either of those markers. IMHO, if your son has tested positive... -
ARCHIVED My Dh Is Not Disappearing...
nasalady replied to Woolygimp's topic in Dermatitis Herpetiformis
Hi Woolygimp (and ChemistMama), Same thing with my husband, Paul. His DH got worse before getting better, even after being gluten free. Ended up on Dapsone for quite a while. The problem for Paul was that he developed a severe case of psoriasis simultaneously with the DH, and in a lot of the same places! It was terribly confusing... -
ARCHIVED Cross Contamination Question?
nasalady replied to LisaaaNoel's topic in Coping with Celiac Disease
What if your husband wipes all the crumbs off a counter but there's still enough gluten stuck to the surface to contaminate your food? What if wheat flour is suspended in the air and lands on your salad...or you breathe it in? What if you have a four-year-old who scatters gluten-y crumbs all over the place no matter how careful you try to be? ... -
ARCHIVED How Long To Be On Gluten Before The Tests?
nasalady replied to trixiesirisheyes's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Theresa, I'm sorry....I do understand! I was gluten free for about 2 weeks then went back on gluten. OUCH!! Everything hurt! I guess I had missed the fact that you had only been gluten free for 3 weeks prior to this. Yes, that actually does make a difference! Your body probably had not had enough time to heal in just 3 weeks, so maybe you'll be... -
gfp, You're correct of course.....my original point in giving that as a reference was that it was one of the few studies I had seen that quoted the "low" frequency of celiac and lupus occuring in the same person. But, as you've pointed out, in this paper from the Journal of Clinical Gastroenterology, they *are* apparently trying to slant things to make...
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ARCHIVED How Long To Be On Gluten Before The Tests?
nasalady replied to trixiesirisheyes's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Two week will not be long enough. You should be eating *lots and lots* of gluten for at least 3 months, as you were told earlier in this thread. Also, if you really are celiac or gluten intolerant, eating gluten will NOT be pleasurable....it will be torture after the symptoms hit! My advice would be to either re-schedule the tests for March, or just... -
Hi MsLee, Thanks for the link.....that's very interesting research! I've recently found out that LLMDs rarely accept ANY type of insurance. I'm paying for everything up front (including the Igenex Western Blot test), then I have to present it to the insurance company to see if they will reimburse me. It is expensive! The Western Blot is $475 and...
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That is really interesting....I've been reading that people who are being tested for lupus, RA, MS, etc. should probably be tested for Lyme disease as well, as part of the diagnostic process. My family has a long history of lupus and other AI diseases....I have aunts and cousins with lupus that live in other parts of the country; some of them I've never...