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About kelliac

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  1. Have a quick question. Does anyone have babies with strange sores? My 7 month grandson was accidently glutened several weeks ago (baby food had barley flour, daughter didn't notice). He had the usual first reaction of many dirty diapers. Then a week and a half ago he had a sore on the tip of his finger. Looked red, puffy, irritated, like a burn. Then a sore similar to this broke out in his groin. Another on his lower leg. Last week, while in the car, he had a seizure and stopped breathing. Very scary experience. Took ambulance to ER where they did blood work. Diagnosis was a fever seizure due to a viremia (spelling?). He was warm and acted differently that day. But, didn't really act that sick. In the ambulance, he broke out in a sandpaper-like rash all over his face, legs, stomach. He was not himself for a day or two after the ER visit. However, he's still sprouting various sores, now has one on his thumb. Could this still be from the gluten previously. Does anyone else have babies with fever seizures or strange single sores that come and go all over the body? Thanks.
  2. DQ3, subtype 8 is one of the main celiac genes (known as DQ8), DQ3, subtype 7 is one of the gluten sensitive genes. So you have two gluten sensitive enteropathy genes (one formally known as celiac and the other known as the catch all gluten sensitive) and all your children (if you have them) will have at least one gluten sensitive or celiac gene. This info is on the enterolab site under test interpretation, FAQ, etc. Best wishes and welcome to the celiac world!
  3. Also have/had thyroid problems. Started getting goiters in early 20's. Was prescribed anaprox/naproxen for inflammed thyroid. Lived on the stuff. Felt great for the first time in years. They (goiters) would come and go, first seasonally, then monthly. Eventually had difficulty swallowing. Docs felt my neck and would say "feels normal." Labs were always "normal" at that point as well. Later learned that the thyroid tries to maintain it's levels and even though it may be "sick" you wouldn't know it by labs. Eventually had goiter that didn't go away. Sent for uptake studies, xrays, CT's, sonograms. All tests came back Hashimotos/Mixed Thyroiditis/Graves. Sono showed thyroid grew down my chest on the inside. Too large for surgery. Had ablation. Been on synthroid (every dose imaginable) ever since. Can you tell me why you should stay away from synthroid at all costs? Endos/Rheums have since explained that the thyroid disease was related to the untreated celiac whereby inflammation from the intestine caused the chain reaction that in turn caused inflammation throughout the body and eventually in the thyroid. Mother, sister, father-in-law all have had ablation or surgery and celiac disease. So I'd vote for thyroid probs with celiac!
  4. Agree completely. Look how many people are on this site with DQ1 (myself included). This is not a matter of "us" (celiacs, DQ2, DQ8) vs. "them" (non-celiacs, gluten sensitive or not), but rather we all suffer the affects of gluten. Whether we see a loved one experience it, or our insurance bills skyrocket due to millions who are undiagnosed and the myriad of diseases associated with it, or our taxes increase due to special education funds for undiagnosed children requiring additional assistance, we all pay a price. Look at the studies that show the numbers of celiac sufferers in our prisons and mental health institutions. Staggering. Sobering. Upsetting.
  5. thank you. just wondering where to find brownies and cupcakes already made (not packaged for grocery but for a bakery type setting). best friend has a place in PSL and she's heading there in January. Everytime she goes she misses her baked goods. I saw a Whole Foods listed in PBG. Their gluten-free listing has their bakery department with gluten-free brownies etc. Have you tried them? Just wondering how "real" they seem. Thanks again.
  6. Looking for a good bakery that sells gluten-free cookies, brownies and the like in Port St. Lucie, Florida area. Even stores that are not specifically gluten-free that have gluten-free selections would be great. Thanks so much in advance!
  7. my usual response, do the enterolab gene swab test. funny how the gi says "all was fine and normal with it." Then they still want to do the biopsy and colonoscopy next wednesday. you can still have damage to the villi and normal blood work (I did). Just ask the doctor to take at least 15 biopsies from various spots while they're in there. I saw the recommended number of 15 biopsies on another celiac site. The reasoning being that less than that can miss the areas too often. 15 can still miss them, but your odds are greater. Best wishes.
  8. Hi, I'm a DQ1,1 (6,6) who tested 5 of 5 biopsies positive for celiac. My mother is DQ1,1 (5,6) and she is the same. So, yes, we are living proof that you can have villi damage and not have DQ2 or 8. What I love best though is the enterolab testing since it is non-invasive. The swabs are great for everyone, especially testing of babies. The stool test is easy as well and what Dr. Fine says makes sense. The antibodies show up in the organ that is being affected first (intestines) and if, and when, it gets into the blood stream, the damage is just that much more. I just read a recent recommendation that people should eat at least three weeks worth of gluten (6 servings a day) minimum prior to biopsies and that no less than 15 biopsies should be taken. Even then the experts say if you don't get the right spot there is a great chance that it will be a false negative. When people say there should be a better way, there is: enterolab.
  9. Also have plantar fascitis (spelling?) in the right foot, mostly. On and off for years. Much less since going gluten free but still suffer every so often. Learned from a massage therapist that celiac/gluten intol causes problems with connective tissues such as ligaments and tendons and the foot arch ends up troublesome with most celiacs sooner or later. Another massage therapist who does reflexology says that when it is in the center of the right foot it indicates liver problems. Center of the left foot means spleen and stomach problems. Higher towards the toes means lungs, etc. They say to picture the bottom of the feet as if looking at a body. Toes being the head and heels being the feet. Pretty interesting.
  10. I personally get sick when I eat tofutti products, saw some similar reactions in this forum. Thought it might be something else so I tried tofutti two more times after the first episode. I was then fairly certain something in Sour Supreme, Better than Cream Cheese and Chocolate ice cream was the culprit. This is the response I received from Tofutti regarding any of their products being gluten free: "All of our products are always dairy free. We do not sell any of our products as being gluten free" Needless to say I won't be retrying the products again. Although wheat is not specifically listed as an allergen on the label, I am reacting to something and it may be a gluten containing item not from wheat. Just wanted to pass on this important statement from the company for others to consider.
  11. My celiac friends and I always talk about "suspected" celiac celebrities. Here is our list and reasons. We've even tried to contact some to suggest the possibility, but of course, they are difficult to reach. List includes living and dead. Strictly our opinion (not fact). For fun, not seriousness. See if you agree. . . List #1 - Liz Taylor (short stature, English, broken bones), Sharon Stone (thin, asthma?), Halle Berry (diabetes, Irish mom?, lots of broken bones), Michael J. Fox (short stature, English?Canadian), Lindsay Lohan (red hair, short, asthma?, broken bones), Tommy Hilfiger (sister with MS), Colin Farrell (Irish?), Mickey Rooney (short stature), Donald O'Connor (Irish?), Hitler (which someone already wrote about earlier), Tom Cruise (short stature), Britney Spears (short stature, broken bones), Rosie O'Donnell (Irish, short stature), Seth Green (short stature, red hair), Renee Zellweger (can't remember why we suspected her), Sharon Osbourne (colon cancer, short stature), Kennedys (Jackie, Jack, John Jr., and so forth-various reasons), Grace Kelly and Princesses Caroline and Stephanie (alopecia for Caroline, moods for Stephanie, Irish for Grace). List #2 later. We try to think of short, bald or thin hair, broken bones, red hair, Irish, Dutch, or various backgrounds, moods, teeth, autoimmune diseases, and we come up with this stuff. Too much time on our hands I guess.
  12. Robix, your story sounds too familiar. How many people seek help from medical professionals to be told it's nothing. Just yesterday, a dear friend of mine saw her doctor, mentioned her positive genes for gluten intolerance DQ1, subtype 6 (per enterolab) and was told "Gluten Intolerance is NOT celiac disease so go ahead and eat all the wheat and gluten you want." She was so excited to hear that she could have her favorite foods again she stopped for a donut. People trust doctors and look to them for sound advice. With all the recent research on gluten intolerance being the big picture and celiac being just a portion of that, you'd think that doctors would be learning about the significance of being gluten intolerant period. Needless to say, she became violently ill after her donut. She just went gluten-free in the past several months (after a lifetime of diarrhea and miscellaneous other symptoms) and was doing so well!!! She finally went off prednisone. Trying to stop the remicade. I think she got the picture when she reacted so violently to gluten yesterday after being told it wouldn't make her sick. No doctor can tell her it doesn't make a difference. Her body told her differently. Back to your experience at the doctor, I'm sorry to hear about what happened. As I have mentioned on previous posts, I cannot say enough good things about the genetic testing at enterolab.com. It gives you a confirmation if you have the gluten intolerant genes or celiac genes, and that in itself is a relief to know something. I personally was diagnosed celiac through biopsy, was told by that doctor that sometimes biopsies are wrong, was retested and still came up with damaged villi, then blood tested (after being gluten free) and those results were negative. After a year of going on and off gluten-free diets per the different doctors advice, I saw a doctor that told me in no uncertain terms to go gluten-free. I did that day and never went off since then. Even with positive biopsies, positive dietary responses, positive family history, I was still in denial I guess. I ended up doing the enterolab testing and when it said double gluten intolerance genes, I realized both my parents had gluten intolerance and I indeed had to stay gluten-free. Since that time, many more family members have been tested and every single one has double genes. Even my husband has one celiac gene and one gluten intolerant gene. His parents are double carriers as well. All our children are doubles. It is like that old commercial that goes "and so on, and so on and so on." Sad but true. Wishing you nothing but good things. Stick with celiac.com. There is a lot of great advice by people who live this and understand. Hang in there.
  13. They are a certified laboratory. Dr. Fine is an M.D. It's really more of a lack of knowledge issue with doctors when it comes to recommending enterolab. They just don't know much about the subject due to their medical school training. The information regarding gluten intolerance grows by leaps and bounds everyday. It's hard to keep up. However, as far as having results in your hand and a doctor accepting them, they should. Genes are genes and they cannot be changed. Whether or not your doctor knows and understands genetic markers for gluten intolerance is another question. Again, info is available on the internet (from some reputable sites such as the NIH that Doctors will believe) that shows what diseases are linked to what genes. So, they should believe the info after they research it. Go with documentation from reputable sites and if your doctor has a problem with it, get a new one.
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