Rebecca's mom
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Youngest daughter (with Down syndrome) had "Silent" celiac disease; diagnosed in April, 2008 - rest of family tested negative on blood tests
After I went on gluten-free diet, realized that I am, at the very least, Gluten Sensitive (have not had genetic testing done) - will never go back on gluten, because the reaction is just not worth it -
Had rest of family genetically tested - none of them carry the celiac disease gene, but all of them have 2 gluten-sensitive genes; must mean that I am the carrier -
Wondering if the skin condition that I had (non-itchy lesions that wouldn't go away until gluten-free diet) might have been a form of DH
I am now doing personal research into a possible connection between undiagnosed maternal celiac disease and the incidence of Down syndrome births, given the high number of people with DS who also have celiac disease
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ARCHIVED Severe Muscle Weakness. Unknown Cause.
Rebecca's mom replied to mark6556's topic in Related Issues & Disorders
I've been gluten-free since April, 2008, and went to see an ocular plastic surgeon today, because my right eyelid has started to droop. I was *this* close to getting an eyelid lift covered by my insurance when she said that she needed to do one more test, "Just to be sure". Well, wouldn't you know it, I "failed" that test, and now I have an appointment... -
ARCHIVED Question About Listing Of Celiac Support Groups
Rebecca's mom replied to Rebecca's mom's topic in Board/Forum Technical Help
Thanks so much! -
ARCHIVED Question About Listing Of Celiac Support Groups
Rebecca's mom posted a topic in Board/Forum Technical Help
I just went to the link for the listings of local Celiac Support Groups, and the last state listed is Montana. I am pretty sure that there are local support groups in the states that begin with the letters N-Z; is a page just missing, or am I going crazy? -
ARCHIVED Weight Loss Surgery, Questions About Celiac Disease
Rebecca's mom replied to Whimsy's topic in Related Issues & Disorders
Just out of curiosity, what made you look at Celiac Disease in the first place? I do hope that you are able to find some answers to your questions, but even if your test results come back negative, you might want to give a GFD a try. I don't know if the WLS will affect your test results or not - it might be something to ask your GI and/or PCP. At the very... -
ARCHIVED Citric Acid Sensitivity
Rebecca's mom replied to GFtraingirl's topic in Food Intolerance & Leaky Gut
I haven't noticed a problem with citrus fruits, but I haven't eaten any in a while - it will be interesting to see what happens. It appears that - in my case, at least - I personally am having a reaction to the Aspergillus mold that is used during the manufacturing of "food grade" citric acid. I have a similar reaction to vinegar, as well - apparently some... -
ARCHIVED Citric Acid Sensitivity
Rebecca's mom replied to GFtraingirl's topic in Food Intolerance & Leaky Gut
I am so glad I ran across this thread - I've been having reactions to canned pineapple, and I couldn't figure out what could have been causing it! I have a different "reaction" from most people - I start itching uncontrollably when I accidentally ingest gluten, and it doesn't take much at all. I also have been having problems with an ingredient called ... -
ARCHIVED A New Weight Loss Support/accountability Thread
Rebecca's mom replied to lonewolf's topic in Related Issues & Disorders
Yes, high-fat is VERY important, and I ran across an article just the other day while researching diabetic information because my DH is pre-diabetic. If you will go to Open Original Shared Link there is an abstract for a study which was just completed which shows a very compelling connection between diet drinks and not only a significantly high risk of developing... -
ARCHIVED Just Plain Fat
Rebecca's mom replied to curiousgeorge's topic in Related Issues & Disorders
Our family has been gluten-free for the past year, and I have lost 40 pounds without even trying, simply by eliminating gluten from my diet. I have found, however, that I have to limit the amount of GRAINS that I eat - I eat potatoes and corn (to me that is a vegetable) with no problem whatsoever. I also have found that in order to LOSE fat, a person... -
ARCHIVED How Long For Villi To Recover?
Rebecca's mom replied to RoseRobin's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
It would really depend on how much damage might have been there to begin with. Our youngest daughter was diagnosed a year ago with both gliadin and tTG numbers >100 (pretty high for a 7-year-old). At her last check-up a couple of weeks ago, her tTG was 6 (<5 is negative for villi damage). Generally, the higher the tTG number, the longer it will... -
ARCHIVED Itchy Skin And Bloating
Rebecca's mom replied to a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Have you looked at the Dermatitis Herpetiformis forum? The itching is a "classic" symptom of this skin rash, which is 100% correlated with Celiac Disease, regardless of your bloodwork results. -
ARCHIVED Anyone Else With Positive Doctor Experiences?
Rebecca's mom replied to princesskill's topic in Doctors
Our youngest daughter, Rebecca, was diagnosed 1 year ago with Celiac Disease. Her tTG number was >100, as was her anti-gliadin number. She had Borderline Stage IV damage to her intestines. She had NO symptoms - none. The only reason that her celiac disease was "caught" is that she has the most awesome pediatrician. Rebecca has Down syndrome. Her pediatrician... -
The bloodwork will only tell you if you have almost TOTAL villous atrophy, not mild - many people (myself included) think that ANY degree of villi damage warrants going on a GFD. You may simply be Gluten Sensitive (I think they are starting to use the term Non-Celiac Gluten Sensitivity [NCGS] to describe this). However, if you feel better on a GFD, then...
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ARCHIVED Can You Recommend A Book About Celiacs In Toddlers?
Rebecca's mom replied to mygfworld's topic in Parents, Friends and Loved Ones of Celiacs
You may want to check out R.O.C.K. (Raising Our Celiac Kids) - I think they have a website. Also, Woodbine House Publishing puts out a lot of books on different topics for kids with specific health issues - Down syndrome, Autism, ADHD, Celiac Disease, etc. - you may want to ask to be put on their mailing list and request a catalog from them. Our youngest... -
ARCHIVED Is This Site For Mothers With Children Who Have Celiac?
Rebecca's mom replied to rainewhitlock1's topic in Parents, Friends and Loved Ones of Celiacs
This isn't something that adults usually have to worry about, but most people forget that Play-Doh has wheat in it. If it gets on a child's hands, the hands go in the mouth, and they get a gluten reaction for no APPARENT reason. Same thing goes for sheet rock and joint compound - which our family found out the HARD way last month while doing a home renovation... -
I had the same problem - don't know what might help "internally", but I just went out and bought some really "strong" clear nail polish (Sally Hansen's Triple Strong Advanced Gel Nail Fortifier) and have been using that for the past month or so. It has helped a lot. Just about any nail "strengthener" should work - and I am NOT a nail polish kind of gal...