April in KC

This is a very old thread, but I haven't been on the boards for several years. I logged on to look for more info on this. My husband and I both have Celiac Disease. We have three gluten-sensitive kids, and one of them also has PANDAS. I have met two other parents whose children have both Celiac Disease and PANDAS. They're both autoimmune conditions; I'm not sure if there is a link beyond that. For my son, the PANDAS showed up years after he was on the gluten-free diet. So for those hoping the GFD "fixes" PANDAS, probably not. But certainly, getting glutened can be bad for your brain in other significant ways. :S

You're sweet - my husband and I both have Celiac, and we hope when our sons grow up, they find such sympathetic girlfriends. Find out whether she wants you to attempt to cook for her at first, or if it will just make her feel nervous and pressured. Better yet, offer to cook WITH her, i.e. you'll cook if she hangs around to supervises. We do get so tired of cooking sometimes! Many times, the people in our lives who love us attempt to cook for us in their gluten-containing kitchens as a surprise, and once they have gone through the effort, we feel like we need to eat the food to show them how much we appreciate it. It's all well intentioned on everyones' part, but sometimes you get glutened this way. Then the person who is glutened is embarrassed to tell the well intentioned person that they were glutened by their food - afraid they'll be hurt or put off, scared to every try again - it's not good. Typical newbie mistakes would be making gluten-free cookies on your regular cookie sheet - or a gluten-free cake in your regular pan - or gluten-free pasta using your regular pot and colander - or using part of a stick of butter that was used directly on a piece of toast. Unfortunately, gluten sensitivity comes from the part of the immune system that is used to fight bacteria and viruses, so it takes very little "contamination" to raise a response in some people. The first year after I was diagnosed, I was particularly sensitive. I suggest taking things slowly with regard to cooking - use her kitchen, or use yours with supervision - until you get used to the type of issues that can pop up. You're off to a great start - good luck!

If you're going shopping in a typical store (not a health food store with a special gluten-free section), here are some things to look for: Breakfast * Chex Cereals - there are five kinds that are gluten free. They will say gluten free on the box if they are gluten free. Lunch * Progresso Soup - if you do a search here, you can find out which Progresso soups are gluten free. Kettle brand potato chips. Dinner Ideas * Chili, Mexican (McCormick taco seasoning is gluten-free, read labels to find all corn taco shells or corn tortillas), pot roast, baked potato w/toppings, any grilled meat w/ veggies If you have a health food section in your store, you can look for Tinkyada gluten-free pasta. Or try your favorite pasta sauces over rice for a risotto type meal. If you find Udi's bread, buy it - you won't be sorry.

Sorry for posting something technical, but since I'm not a doctor, I wanted to go with a somewhat trustworthy source. http://www.ncbi.nlm.nih.gov/pubmed/20298806 I'm sure there are better sources, but the abstract for this clinical research seems to imply that the inflammation from Celiac Disease itself can be partly to blame for cancers. I do think some of the increased risk is from sharing certain genes, but other parts of the risk come from having chronic inflammation in your GI tract. So - avoiding mild glutenings is a good thing.

Welcome! Sounds like you could definitely be gluten sensitive. Yes, barley contains gluten, and yes, I think your old bread machine might have glutened you. The quantity of gluten Celiacs can safely consume is estimated by some as 20 ppm (parts per million) and by others as none at all! Unfortunately, the human immune system can be very sensitive. The part that fights gluten is the same part that fights tiny viruses and bacteria. Right now, being newly gluten free, your immunne system is primed to put up a decent fight for any invading gluten. My first year gluten free my reactions were quite severe, but they are less severe now (a blessing and a curse, because sometimes it's more difficult for me to tell exactly what glutened me now). You may have to buy some new utensils and keep your own condiments, etc., to be safe in your kitchen. I covered a lot of dishes and surfaces with parchment paper, aluminum foil or waxed paper until I had time to buy what I wanted. Beware the strainer/colander. Good luck. Doesn't it feel good to feel better?

I went gluten free three years ago. I have Celiac Disease (30-lb weight loss) and DH, but some of my worst symptoms were neurological - dizziness, brain fog, stumbling, headaches, etc. When I first went gluten free, I felt great, but when I got accidentally glutened, the symptoms were terrible - I would fall asleep hard and have trouble talking/being coordinated for a few hours, then get moody, and then the physical symptoms would follow - GI problems, skin problems and muscle aches. That first year gluten-free, I joked that I had an 'early warning system' because I would get headaches while eating and know that I was eating something CC with gluten. Now, a few years gluten-free, I am not nearly as sensitive. I think it's a blessing and a curse (mostly a blessing). I think my lower antibody levels must make the reactions less severe, but I have lost my early warning system and now I have more vague symptoms unless I eat something really contaminated. Sometimes I realize that I have been feeling 'off' for a while and have to go back to eating basics until I figure out what has been bothering me. I think I still get glutened too frequently. My dad is also Celiac. He's older, and he cheats and eats gluten once every month or two. He says that his reaction is not bad if he only eats it once and then stops, but if he tries to eat gluten on two separate meals or two days, his reactions are much more severe. I don't at all recommend what he does (it triggers his psoriasis among other things), but it is interesting in that it supports the idea that peoples' symptoms can increase or decrease along with the levels of antibodies.

For years, my husband's symptoms were not very definite, but he definitely had "GI issues." He never thought he could tie it to a specific food, and he never knew when he was going to get sick. After going completely gluten free, he no longer gets sick. If he gets glutened by accident, his worst symptoms are always the morning after. It took going completely gluten free for a couple of weeks to prove to him that it really was gluten causing his problems. (That, plus his TTG blood test was positive...) Also, family member I know who has Celiac has noticed that he can eat gluten about one time a month with no obvious symptoms, but if he eats it again the next day he gets quite sick. (I'm not recommending anyone try this...he's older and just does what he wants.) His theory is that his symptoms (mild GI and lots of brain fog, cognitive problems, etc.) - that his symptoms are more a result of the gluten antibodies than the direct damage to his gut. So by waiting a month, he lets his antibody levels decline to the point where eating gluten once does not really bother him that much. But after eating once, his theory is the antibodies build back up from that one exposure, and if he eats a second time in a row, then he really has strong symptoms.

Vitamin A deficiency can cause skin bumps almost identical to keratosis pilaris. Night blindness is another symptom of vit A deficiency.

There are little "disposable" blood sugar kits you can buy at Wal-Mart (probably other pharmacies) for about $25 or less, much less expensive than a nicer permanent meter with memory. They have a limited number of test strips, but they do the trick if you just want to test your blood sugar for about a week. You should test first thing in the morning, before and after eating, and any time you're feeling hypo. The first year I was gluten free, I did have quite a few incidents of hypoglycemia. I'm not sure whether it's because my body was adjusting, or whether it was because I was experimenting with new types of foods and sometimes ate unbalanced meals. You might look into a condition called reactive hypoglycemia if your symptoms come on as a delayed "crash" following sweets or high glycemic index foods (many gluten-free cookies and foods like rice pasta have a high GI).

Hi Fiore - I have read that a low-oxalate diet may help some women with vulvodynia. If you haven't already given this diet a try, you might scan the "high oxalate" foods on this list and avoid them: http://www.branwen.com/rowan/oxalate.htm (Please note that this list does not show a distinction between gluten free and non-gluten free foods.) I'd also encourage you to stay gluten free for at least a month or two...if you're up to it, try low oxalate and gluten free at the same time. Best of luck to you - I'm sorry you have had to endure what you have. Hopefully you get some relief from your pain. I had pelvic pain for years (not vulvodynia) - it is much better now that I am gluten free. I hope you find your answers. April

I showed my dermatologist my thin, splitting/peeling nails, and she mentioned that Biotin (B7) helps some people, especially if their nails were not always like that (for some it's hereditary). I take a Kirkman multivitamin, but it only provided 15% of the RDA on Biotin. I recently added a 1000 mcg lozenge sublingually. It will take a few months for the new nail growth to reach the tips of my nails, but I'll eventually let you know if it's a success. I have had thin and splitting nails for most of my life, but they got worse when my Celiac malabsorption really kicked in a couple of years ago. Last year, I found I was also deficient in vit D, which another poster mentioned. I supplemented for a few months to get back up in an acceptable range. I'm a redhead, but I'm going to try to get more sun exposure this summer, which should help the D out even more.

I guess I'm on both sides of this one. I found it very helpful to lessen iodine exposure for about six months after going gluten-free. It helped my DH go away and stay away. I would get noticeble flares after salty food or seafood. After avoiding iodine for some time, I developed some minor thyroid issues - I was starting to feel a lump when I swallowed. I knew it was time to reintroduce iodine in my diet. If you're going to cut back on iodine, please be aware of the symptoms of iodine deficiency: - enlarged thyroid (goitre) - dry skin - hair loss - fatigue

Marcia, I haven't tried salt loading, but I'll read up on OI and salt loading to see what it's about. My orthostatic hypotension is really minor...it happens a lot, but usually just causes me to feel funny and lose vision for a little while. I've noticed that inhaling/exhaling restores eyesight very quickly - the lights always come back on the exhale breath.

Ding-ding-ding! Vitamin E was probably WHEAT germ oil.

I had a lot of fatigue and insomnia issues prior to going gluten-free, and things got better but also really weird for about a year after going gluten free. I'm about 2 years in now - still have some issues, but overall things are better and better. I don't pull as many late-nighters now, don't take as many naps. RLS seems gone unless I'm glutened. I also have DH, the skin condition, so it's easy for me to put all my symptoms together and figure out when I've been glutened. I had sleep attacks for about a year when glutened, but now I don't have them as frequently or as severely. I have some other posts about it. When I get glutened, my sleep gets dysregulated for a few days. Initially there may be a narc attack, but then later I find myself staying up late at night "buzzing" - but tired.