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greenbeanie last won the day on April 21

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  1. Hi Claire, I haven't been on these boards much lately, but I just happened to see your message and wanted to follow up on my original post above (from 2013). My daughter was indeed diagnosed with celiac a couple weeks after that post, right around her fourth birthday. She had high positives for every test on the panel, and the diagnosis was confirmed by biopsy. It took quite a while for her tTG to completely normalize, but she's been doing great for the past few years. I have no doubt whatsoever that she would have diagnosed much sooner if anyone had tested her. (I also ended up with an official celiac diagnosis from a GI myself, although my case was less clear-cut and involved a miserable gluten challenge.) The interesting development now is that my daughter's tTG started to rise again last year. It had been a very low negative for two years, then rose steadily until it was just below the positive level again. She also started getting mouth sores and tiny bumps on the back of her arms again, which had gone away shortly after her diagnosis. We never eat out, have little processed food, make sure that all grain products are from a dedicated gluten-free facility, and check all toiletries too. I was baffled once again. And I felt fine myself, so I didn't think that we'd had any contaminated food. The only major change had been that my daughter had started putting milk in her cereal! She'd always preferred it dry before, and was eating the same cereal that she'd been tolerating fine for years. She is not lactose intolerant and doesn't really have digestive symptoms from milk, but it has always made her incredibly irritable so she never got in the habit of drinking milk or eating much dairy. We do have cheese a couple times a week, and I never worried about small amounts of dairy in baked goods and whatnot, but she didn't typically have dairy on a daily basis until last year. Then I found this recent article on PubMed, about cow's milk raising tTG in some celiacs: I know this isn't quite what you were asking about, but I found it fascinating. My daughter stopped having milk in cereal a few weeks ago, and her mouth sores and arm bumps went away again. She has a tTG test schedule for next month. If milk is the culprit, I'd expect it be headed downward again by then. Anyhow, I was thrilled to see research on this, and I hope there will be more info coming along about non-lactose-intolerance milk-related problems in celiacs soon!
  2. Welcome, Jane! Those photos look different from the rash I get from gluten - but mine hasn’t been confirmed as DH by a skin biopsy, and I don’t want to hazard a guess about someone else’s rash based on photos, and risk misleading you. Hopefully your doctor’s appointment will be helpful! However, on a totally different note, have you ever been tested for a latex allergy? The locations you mentioned immediately brought that to mind. Completely aside from the rash I get from gluten, I have an IgE latex allergy. My elbows always get fluid-filled itchy bumps when I’m in a car with rubberized coatings on the armrests (only in summer when I have short sleeves; it’s fine as long as my skin doesn’t touch the armrests directly). Similarly, if the elastic in the waistband of my underwear is fraying at all, I get the rash around my waist, and the same for some elasticized socks on my calves. (Some are ok, and I haven’t figured out yet if certain brands use synthetic materials rather than latex, or whether it’s just a matter of how threadbare they are.) If you can use latex gloves, condoms, or blow up balloons with no problem, than a latex allergy is unlikely. But if you’ve ever had swelling or rashes from those things too, get an IgE latex allergy test! It’s probably not that, but it’s an easy thing to test. Good luck!
  3. greenbeanie

    Do antihistimines make DH worse?

    It's encouraging that you stopped being so sensitive to gluten-free packaged foods with time, Victoria1234! I live in an entirely gluten-free household, fortunately, so we have no worries about cc here. My daughter and I both had trouble with gluten free foods made in shared facilities, even those testing below 20ppm, so we eliminated almost all packaged foods for quite a while. We do have some occasionally now, but only things that seem very low-risk (like small amounts of mustard labeled gluten-free that's not made in a dedicated gluten-free facility), etc. We've been doing that for more than a year with no problems, though - and my daughter is still fine now, so I'm pretty sure my recent rash recurrence is not a cc issue from food.
  4. greenbeanie

    Do antihistimines make DH worse?

    Thanks for your reply, squimingitch - and I'm so glad you're safe from Irma! You got me thinking about iodine again, and that may be the culprit. I had been so happy with the huge improvement after going gluten free that a little itch now and then was tolerable. But I haven't really been avoiding iodine aside from buying non-iodized salt, and maybe I've become more sensitive to iodine with time. At various points I have suspected dairy, fish, potatoes, eggs, and salad. I didn't realize until looking it up again now that potato skins are high in iodine, and I wasn't thinking of iodine as a common feature of all those things. So when I tried to test the dairy theory by eliminating it for a week, for instance, I was probably eating more fish or eggs for protein. Same thing when I eliminated eggs - I don't really remember, but it's likely that I was eating more of the other foods. I concluded at the time that dairy (and then eggs) wasn't the culprit after all, but I might have just replaced one source of iodine with another. Antihistimines definitely make my rash flare (and the ones I was taking recently don't contain any iodine/iodide), but maybe that's just because antihistimines can be drying in general. My skin isn't particularly dry, and lotions have no effect whatsoever, but I can see how the internal drying effect of antihistimines might aggravate any rash. Well, new theory to test! I'll try a low-iodine diet for a couple weeks and see if that helps. Thanks again for the suggestions.
  5. Hi folks! For those with confirmed DH, do antihistimines make it worse? I'm trying to figure out an unpleasant puzzle. I've been strictly gluten free for over four years. It took a couple years of eliminating all processed foods for symptoms to resolve, but finally I've been feeling amazingly good for the past year. I have an official celiac diagnosis from a GI, and my daughter has biopsy-confirmed celiac, but my own diagnosis was on clinical grounds because I was unable to complete an adequate gluten challenge due to an awful reaction. I'd had an incredibly itchy DH-looking rash for over 30 years at the time of testing, but it was not biopsied because I'd been gluten free for months at that point. On a gluten free diet, the rash improved right away and mostly disappeared within the first year. So...the mystery is that the rash has slowly come back in recent months. Nothing in my diet has changed. I cook almost all of my food from scratch, don't eat out, and mostly avoid iodized salt. The only medications I take are OTC antihistimines - the same gluten-free brands that I was previously taking with no problem. Weirdly, the antihistimines seem to make the rash worse! It flares up dramatically a few hours after taking it. But blood tests indicate that I am not having an allergic reaction of any sort (i.e., rash isn't caused by an allergic reaction to the drug or to environmental allergies). Obviously I can no longer tolerate antihistimines, but I'm trying to figure out why. ALL antihistimines worsen the rash - Allegra, Zyrtec, Claritin, Benadryl, children's dye-free liquid that has entirely different inactive ingredients, etc. One thought is that I might have suddenly become more sensitive to trace gluten in the medications, even if they're listed as gluten free. Another thought is that maybe the mechanism that makes antihistimines work for allergies somehow worsens DH? Has anyone else experienced this? I've been referred to a very good dermatologist, and I'm sure he'll biopsy the rash. My appointment isn't until November, though. (I know a biopsy wouldn’t show DH after this long gluten free, but it might indicate or rule out other things.)
  6. Hi folks! I haven't posted in a while because my daughter and I are both doing great since we removed a few certified gluten free products from our diet last spring that had trace gluten below 20ppm. In a roundabout way the rise and fall of my daughter's blood tests along with my reaction to trace gluten cc (before we knew there was any) and quick disappearance of fat malabsorption after eliminating those products actually led my GI doctor to give me an official celiac diagnosis on clinical grounds even though I did not meet the usual diagnostic criteria. So I am now getting proper follow-up, which is great. However, one consequence of this is that my doctors are taking a harder look at a variety of minor/moderate abnormalities that had come up on various tests in the past, which they had dismissed as inconsequential at the time. I have two small lesions on my liver, one of which has been confirmed as an atypical hemangioma and has remained stable in size. The other lesion may also be an atypical hemangioma or adenoma, but neither ultrasound nor MRI could get a clear picture of it. An abdominal CT scan is recommended, but I've had multiple CT scans and other high-radiation tests over the past ten years, and I'm reluctant to get another one when the lesion is almost certainly benign and the CT scan might not even get a better picture of it than the MRI anyway. My liver is otherwise normal in size and appearance, though I do have a couple small cysts on my spleen too that they are not concerned about. My recent liver panel showed normal enzymes and other blood tests. I had a positive ANA in the past that has normalized too. I have no symptoms, and the liver lesions were an incidental finding from my GI's original work-up a couple years ago. I'm seeing a liver specialist in a few weeks. Meanwhile, I did find a recent article about an association between celiac and hepatic hemangiomas: Has anyone had a similar experience with multiple atypical hemangiomas or adenomas? Did they grow or shrink over time? Suggestions for what questions I should ask the liver specialist? After so many years of trying to get doctors to take my concerns seriously, it's odd to be in a position where I actually feel sure that the rest of the weird stuff isn't serious and will keep improving with time, whereas my doctors are suddenly treating everything as significant. Both liver lesions are small (less that 1.5cm). I obviously don't want to ignore a problem that really could be serious, but I also don't want to have unnecessary high-radiation tests.
  7. Sorry you're going through this, and I hope you get to the bottom of it soon! Some kids may just be more sensitive to trace amounts than others. A similar thing happened with my daughter (who's now 6), and we ended up finally getting her tTG down by eliminating several certified gluten-free flours that I was using to bake from scratch. I'll avoid repeating all the details, but the relevant threads are here: I do want to note that this was an unusual situation, and most celiacs seem to be fine with occasional tiny amounts of trace gluten below 20ppm. We're hoping for another normal test this winter, which would be 6 months of normalcy, and after that we'll probably try reintroducing the certified gluten-free flours to see if she can tolerate them now. If her tests staryed normal for an additional 6 months the plan is to try gluten-free oats...but we're still a long way from that point. Anyhow, it was very frustrating when I KNEW we were not missing any gluten, and nothing had changed at school, and her tTG just wouldn't go down. When I finally figured out it was the gluten-free flours and eliminated them, it dropped to normal in less than two months! We were thrilled, and all her doctors were amazed. Again, it's probably a minority of celiacs who have this problem...but if all else fails, completely stopping all baking (even from scratch with certified ingredients in an entirely gluten-free house) is worth a try. Good luck!
  8. Have you tried Tinkyada brown rice pasta? I've made lasagne with their noodles for gluten-eaters many times, and no one even knew it was gluten free. Their spirals are also great. The consistency is a little different from wheat pasta, but not too much. Aside from being really yummy, this is the best brand I've found in terms of acceptability to people used to wheat pasta.
  9. My daughter's school is nut-free but otherwise allows kids to eat anything in the classroom. It is a private school in the U.S. with no cafeteria, so everyone eats lunch and snacks at their tables. The teachers assign places and marked each child's place out with masking tape early in the year, and taught them to keep their hands in their own space and not share food. At first they put her at a table with other gluten-free kids (though none with celiac, as far as I know - all their parents seemed unworried about cc). I also packed her a clean cloth napkin to use as a placemat, even though the teachers were great about washing the tables. As the year progressed they switched up the table assignments, but they always seemed careful not to put my daughter next to any of the "grabby" kids. She was in kindergarten last year. This worked for us, but we were extremely lucky that one of her teachers has a family member with celiac himself, so he truly understood how important it was to keep her space clean. They always made sure they had a gluten-free cutting board to use for school parties with watermelon, etc. For birthday parties when other kids brough in treats, they knew not to give her any even if it was from another gluten-free kid's home, which was socially awkward but necessary because I knew from conversations with parents that their kitchen equipment was not gluten-free. We kept cupcakes and a stash of other treats at school for her. They did use gluten-free art supplies in the whole classroom. These precautions turned out to be sufficient for my daughter. She did not seem to feel left out, but she did have to be vigilant all the time. While she's never ended up in the hospital from gluten exposure, her celiac antibodies took two years to fully normalize, and they didn't get into the normal range until we eventually eliminated even certified gluten-free products that were made in shared facilities. So she is sensitive to levels under 20ppm. Even so, her blood tests did finally normalize even while in this classroom with kindergarteners eating their own gluten lunches from home. Her teachers were really outstanding, which is the biggest reason she felt safe eating at school.
  10. I have not found a brand of sorghum or millet flour that I trust and can get locally. But the stores in my area only carry a limited selection of Bob's Red Mill flours, and I would probably try those if they are from a dedicated gluten-free facility. We use BRM rice flours (brown and white) with no problem. I have not investigated teff yet, or cared enough about sorghum and millet to order them online. Avoiding all baked goods for a while (even home-baked) seems like a sensible plan! As for not retesting products that come in under 20ppm, I feel reasonably confident with that. There's certainly no guarantee that another batch wouldn't have more cc, but having one test that shows no detectable gluten at all (i.e., under the detection limit of 5ppm) seems like the best we can do with the current knowledge available. We've had good luck using only grains and other processed foods that had been tested and had no detectable gluten. We've used the testing results as a kind of alternative to the strict Fasano diet: rather than completely eliminating everything except rice and fresh fruits, veggies, dairy, and meats, we also allowed products that were independently tested and found to have no detectable gluten, plus a few specific foods that we felt fine about because she'd consistently seemed fine with them. It was less socially isolating for my daughter than the Fasano diet would have been, for sure. And it worked for us. We completely cut out any gluten-free foods that had any detectable gluten at all, even amounts under 20ppm. We also completely cut out any certified gluten-free powdered/ground flours or spices that weren't from a dedicated gluten-free facility, regardless of testing procedures or results. In reality, this means we only use fresh herbs and salt and pepper as seasonings. I trust that a moderator will step in and let me know if I say anything inappropriate here, but I see no harm in posting specific products/brands that we feel *good* about. My daughter was eating the following processed foods with some regularity at the time she finally got normal test results: Crunchmaster multi-grain crackers Sunbutter Honey Rice Puffins cereal Tinkyada brown rice pasta (various shapes/forms) Welch's fruit snacks Schar breads (various) French's yellow mustard Applegate Farms beef hot dogs Boar's Head pepperoni My daughter has not tried gluten-free oats yet, except in a few isolated instances over a year ago. We want to see her tTG in the normal range for at least six months before we try that. I am somewhat hopeful that we'll be able to transition to a "normal" gluten free diet (not worrying about amounts under 20ppm) after she heals more. Although she wasn't diagnosed until age 4, she had many symptoms since very early infancy, after a traumatic birth and multiple antibiotics in her first week of life, so it's not too surprising that it might take her system longer than usual to recover. From what I hear about the Fasano diet, at least, it may only be needed temporarily until a certain level of healing is achieved. I'm hoping that my daughter is in a similar situation here, and will be able to branch out more after a while.
  11. Hi shanasun, We finally got my daughter's tTG into the normal range - for the first time ever - last month. For her, it did end up being the trace gluten of less than 20ppm in some combination of three different certified gluten free flours and spices. All were certified by the GFCO. They were the only ground/powdery products that we used from facilities that weren't dedicated gluten free. I'd been trusting both dedicated facilities and certified products that came from mixed facilities. Many celiacs apparently eat those products with no problem, but unfortunately my daughter is clearly sensitive to amounts less than 20ppm, even when she was only getting a small amount of those flours mixed in with others in homemade baked goods in a gluten free kitchen. Her tTG finally dropped into the normal range about eight (?) weeks after we eliminated those products. Both of her DGP tests became negative too. Both her local GI and a celiac specialist at a children's hospital agreed that the two flours and one spice we identified and eliminated were the problem. We never found any other gluten we'd missed, and her school and other habits had not changed during this time period. I discovered that those products had trace gluten through an independent gluten testing service that I subscribe to. I believe there may be a rule against posting info about other specific websites here, and the test results from that site are available to subscribers only, so I can't say more in detail. But with a bit of Googling, I'm sure you can find it! Sorry if I've repeated stuff from elsewhere in this thread - I'm away from home and only had a chance to read over it briefly. Good luck!
  12. greenbeanie


    I get classic allergy symptoms from sulfites - runny nose, coughing, swollen tongue, etc. It's pretty much immediate, like within the first few bites. As a teenager I went through a period of gasping for breath after eating dried fruit, though we had no clue what was causing it at the time. I react to foods with naturally-occurring sulfites too (yogurt, vinegar, tofu - basically anything fermented), as well as any bleached flours and starches. It was hard to figure from labels, since sulfites are often used in the manufacturing process rather than added as ingredients, so I'd had no idea that lemon juice concentrate and other stuff like that was high in sulfites. It took me about six months after going gluten free to recognize the sulfite issue. I doubt I ever would have figured it out beforehand, as there was just too much going on and I couldn't distinguish which foods were causing which symptoms. This did solve a long-standing mystery about why I often got very sick from mashed potatoes and fruit salad in restaurants but was totally with those same things at home: sulfites and/or lemon juice concentrate are added to prevent browning. This is irrelevant now because I don't eat out, but it was nice to finally have an explanation. Antihistamines do help me quite a lot, though I know some doctors don't consider it a true allergy. In any case, I've been gluten free for over two years now and unfortunately my sulfite reaction hasn't really improved with time. However, I eventually learned my limit, so I can have some fermented foods and bleached flours/starches once in a while as long as I don't have them often.
  13. On the allergy line of camp and school forms, we also put "wheat, rye, barley, oats (celiac disease - must avoid even tiny amounts, but antihistimines won't help)," or something like that. Several camp directors and pharmacists have advised that we list it as an allergy, because staff are generally well-trained to take food allergies seriously, and any substitute or new staff member who looked at the form would see the allergy flag immediately. However, I add the bit about antihistimines because if she ever was given gluten inadvertently, I don't want them to compound the problem by then giving her an antihistimine with unverified ingredients. Even her primary care doctor, who knows celiac isn't an allergy, told us he was listing it as an allergy in their computer system to make sure the info was displayed prominently.
  14. It's the Gluten Intolerance Group's Gluten Free Certification Organization (in the U.S.). They're the ones with the little G F symbol in a circle. Their certification standards are stricter than the FDA's requirement, since they only certify products with less than 10ppm of gluten (and they do test things regularly).
  15. I think I probably shouldn't say the specific brands, since they're products that are probably fine for most celiacs. But it was two flours and one ground spice, all of which were certified gluten-free but made in shared facilities. They were all things I used on a fairly regular basis, but in quite small amounts. No more shared facilities for any ground/powdery products for us, even if certified!