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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!
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.
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.
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
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.
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!
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.
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.
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).
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!
Hooray! It took two years to get it into the normal range, from over 16x the upper limit of normal at diagnosis. Both DGPs are normal now too. We were stuck at low-positive tTG for a long time.
What finally did it was eliminating several GFCO-certified products that had detectable gluten at levels well under 20ppm. Once we did that, we got her tTG into the normal range within eight weeks. Phew, what a relief! And she is doing great - the difference in her mood with this last decrease in tTG is very noticeable. She's never been this happy in her entire life!
What do you all think about letting a kid actually pick strawberries in a field with wheat or rye straw - safe, or too risky? This is something I always loved as a kid, but I've been reluctant to bring my daughter, who is now 6. There is straw between all the rows, which is probably rye straw because that's a more common cover crop in our area. Picking the strawberries involves crawling around directly on this straw on hands and knees for quite some time.
We have eaten berries from these same fields after washing them at home with no problems, but so far we've turned down strawberry-picking invitations. On one hand it seems like it would probably be fine because any grain dust on the straw has probably been washed into the soil by rain already...but I'm not sure it's worth the risk. It would be hard to forbid her from tasting strawberries in the field when everyone else is eating them, and if this required a bath and change of clothes immediately afterward, the outing would probably be more of an ordeal than a fun time. Has anyone taken a kid with celiac strawberry picking?
I don't have much to add about your main question beyond what others have already said - if you were actually tested for celiac with the proper tests and it was firmly ruled out, that's very different than being told you don't have celiac by a doctor who never did proper testing. Many doctors are shockingly ignorant about what tests even to order, and there's currently no test for non-celiac gluten intolerance. People's reactions vary so widely that it's impossible to predict what your reaction might be to going back on gluten.
Regardless of diagnosis, I would strongly urge you NOT to try reintroducing gluten on a trip to a foreign country!!! If you react badly, it would be an absolutely miserable trip. If you plan to try it, do so at home beforehand, with plenty of time to recover in case you get really sick. And only try a tiny bit at a time, waiting several days in between to make sure you don't have a delayed reaction.
After being strictly gluten free for a while, I once took the croutons off a salad and ate the salad. I would never have done this if I had a clear celiac diagnosis, but at the time my doctors thought I probably didn't have it, and people all around me were giving me grief about "unnecessarily" following the same strict gluten-free diet as my daughter, who has biopsy-diagnosed celiac. So I ate the salad....and thought I'd gotten away with it for about 16 hours. Then the diarrhea, nausea, foggy brain, and coordination problems came back full force, and my rash started coming back a few days later. It was like I had the flu for about two weeks. And I hadn't even eaten a crouton, just lettuce that had touched gluten. Since then my doctors have concluded (for other reasons) that my celiac tests were very likely false negatives - but the point is that at the time, it seemed reasonable to think I might not have to be so careful about cross-contamination. I shudder to think how awful it would have been to actually eat a bite of gluten, much less on a trip abroad! Hopefully you won't have that reaction...but it's worth trying it out slowly at home just in case.
My own experience has been that cc could cause MS-like symptoms even for someone without a firm celiac diagnosis. I too was tested for MS several years before going gluten free and getting celiac diagnosed in a first-defree relative, and MS was ruled out by a neurologist at the time. The balance and coordination issues had gotten so bad that I was walking into walls, slamming my hands in cupboards, and falling down stairs on a daily basis. My memory had gotten so bad that I was forgetting common words like days of the week. I was in my mid-30s at the time, so this definitely wasn't normal. I was admitted to the hospital but left a couple days later with no answers. Fast forward several years, and my daughter was diagnosed with celiac. My entire health history and decades of GI symptoms pointed to it too, but I'd been gluten light for many years and my celiac tests were negative. I went strictly gluten free along with my daughter anyway, and the GI symptoms started improving right away and were much better within a few weeks. The neuro stuff was slower to improve, but within a few months I was no longer walking into doorframes on a regular basis. Two years later, I don't feel like all the neuro stuff is totally gone, but it's vastly improved .
Anyhow, it's a long story but recently both my daughter and I were having problems again, and had no idea why. Her tTG rose, and I'd been having continued fat malabsorption plus had also started having shaky balance on stairs again. I'd dismissed the balance stuff as just tiredness from work, etc. We eventually discovered that we were both apparently reacting to low levels of cc (under 20ppm) in certain gluten-free products. We eliminated those products, her tTG fell again within three weeks, and my symptoms resolved. This actually led both my own GI and a celiac specialist that my daughter saw to conclude that I have "presumd celiac" and that my daughter was obviously sensitive to levels under 20ppm. I realize this is unusual, and I hope that once we've both healed more it will no longer be an issue. But the point is that my MS-like symptoms were triggered by very low levels of cc. Happily, now that I know that I was able to fix it. So if it is gluten causing your problems (whether it's celiac or not), it may take extra vigilance to make sure you're not eating anything processed on shared equipment, etc. (even if such products are labeled gluten-free). Good luck!
Update: Well, I'm kind of happy to report that all of this led to as close to a diagnosis as I'm ever likely to get! As I've written in a separate thread at http://www.celiac.com/gluten-free/topic/111191-any-scientific-evidence-than-less-than-20ppm-can-cause-ttg-rise/
my daughter (with biopsy-diagnosed celiac) recently had a doubling of her tTG for no apparent reason. One thing led to another, and I eventually discovered three certified gluten free products that we were using that contained tiny amounts of trace gluten, less than 20ppm. Two were flours and one was a spice. We only used small amounts of these - and again, they were certified by the GFCO and not mislabeled by FDA standards. We're talking really tiny amounts here! But I removed these products from our diet, and just three weeks later my daughter's tTG had fallen again. Her local GI and a celiac specialist at a reputable children's hospital have both agreed that the trace cc less than 20ppm is almost certainly the cause of her tTG rise.
And the thing is that my fat malabsorption went away once we eliminated these too! I haven't had the fecal fat test redone, but the problem is obviously solved, and everything seems completely normal - for the first time in as long as I can remember. I am thrilled. My own GI looked at this evidence, after having ruled out every other cause of the fat malabsorption that she could think of. And she looked back at my health history (including the long gluten-light period before testing), biopsy results, and vitamin and mineral tests and concluded that I have "presumed celiac". She said she was documenting it in my chart. It's not a "real" diagnosis by prevailing standards, but she finally concluded (and I totally agree) that the overwhelming weight of the evidence points to celiac, and indicates that my tests were most likely false negatives.
Separately, the celiac specialist we just saw for my daughter heard just the basics of this story - including the fact that only 4 biopsy samples were taken for me, and none from the duodenal bulb - and said that I should obviously assume I have celiac too. And he wasn't put off by the fact that I have DQ 7.5 (i.e., only the alpha allele of the most common celiac gene).
I am so relieved to finally have a somewhat-official diagnosis in my chart. Although it makes no practical difference in what I do - I'd already realized that I have to be just as strict about the diet as my daughter, and was doing that anyway - it is just a huge relief to have that recognized as necessary by doctors. After 34 years of doctors dismissing my symptoms and thinking it was all in my head, I'll hopefully never have to hear that again!