Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

14 Good

About plumbago

  • Rank
    Advanced Community Member

Profile Information

  • Gender
  • Interests
    Health, mental health, gardening, organic, recycling
  • Location
    Washington, DC
  1. As of November 2015, there are three completely gluten-free restaurants in Washington, DC, more depending upon how you count. The Little Beet is a new gluten-free restaurant. 18th and Connecticut Ave NW. Shophouse Kitchen has four locations around the city. It is Southeast Asian cooking. Rise is a gluten-free bakery in the northwest neighborhood of Adams Morgan. They sold soups and heartier fare when they opened in November 2014, but no longer do. I give this bakery a B. I haven't been to either the Little Beet or Shophouse, but am delighted we have these completely gluten-free options in DC. It's a good thing.
  2. Hello, Good catch. I've seen the Celiac genes written the way you wrote but I've also seen them referred to differently (HLA-DQA1 and HLA-DQB1; or HLA DQ2 and HLA DQ8), but I think the way I wrote it was wrong. I don't know enough about genetics to articulate what the difference is in the different way it's referred to, but as I like to say, it's worth more research. (Also, I am now not sure you have to test positive for both genes as I mentioned originally, I think it's just one.) Thanks for bringing that up. It's good to have accuracy in a thread. Plumbago
  3. Just to clarify, I was originally writing about Rudi's. (Just so we're all on the same page.) But I must admit to being surprised that people are buying what I consider to be fairly standard, unspectacular gluten-free bread (Rudis, Udis for example) at such high prices - that Target price is nuts. Unless things have changed in the last week, the most I ever pay for Udis or Rudis is $6, and that's with tax. Looks like they added bamboo for the extra fiber? Are you referring to Rudis? If so, well then I guess it's bamboo. Is that bad? Plumbago
  4. I completely skipped over the wheat allergy. For some people, it is a life-threatening event that is true. (I see she is not scheduled for endoscopy but rather colonoscopy and gastroscopy. Maybe the gastroscopy is what I would normally call an endoscopy. In any case, biopsies should be taken if testing for celiac disease.) Even if I had a wheat allergy, I'd still want to know if I had celiac disease, for sure. I've known people who tested positive for wheat allergy but eventually de-sensitized to it and resumed eating it. But yeah, get the allergy test for wheat.
  5. You certainly have celiac disease symptoms. Yes, you will have to eat gluten every day for 2 weeks before the endoscopy. The link you provided after that discusses the gluten challenge (serology), not how to eat before an endoscopy to check for celiac disease. [EDIT: Just re-read it. It does say to eat gluten 2 weeks prior to an endoscopy] The last sentence recommends moving right to an endoscopy if reaction to gluten is severe. If I were this person, I would consider insisting on bumping up the date of my endoscopy for health reasons. Otherwise, I would be interested in hearing from others - especially medical professionals working on autoimmune diseases such as celiac disease - on this, because my tendency is to think that 3-5 weeks out from an endoscopy, the small intestine would probably not heal in such a short amount of time if the patient is not eating gluten. It sounds like she has some quite serious immediate health issues. While I understand the need to continue consuming gluten before tests, I always thought that was before serology tests and perhaps for the endoscopy it is less crucial to be consuming gluten, again especially if there are some immediate health issues. It is worth more research, that is for sure. Plumbago
  6. Perhaps consider making the house gluten-free for simplicity. I was thinking this myself while reading the post.
  7. Manasota, I am curious to know more about your diagnosis. Were you diagnosed via a bone scan? Did you scrutinize and research your results? Have you thought about a second opinion? As for the first questioner, I don't know the answer, and would need to do at least a couple of hours of research to understand more about osteoporosis caused by celiac disease. It's a great question.
  8. I recently bought this bread for the first time: Rudis gluten free double fiber sandwich bread. I am posting a comment because it stood out from the rest of the gluten-free breads I've purchased in the past. I know there are a few boutique bakeries around the country (let's face it, mainly on the left and right coasts) that bake excellent gluten-free bread. But the day I start shelling out $10 plus for a loaf of bread is the day you know I've won the $26 million lottery. It just ain't gonna happen. But this Rudis bread stood out based not on taste - which was just regular - but on its texture. Honestly I didn't think it was possible to have chewy gluten-free bread. I'm not sure how they did it, but they did! Like most gluten-free breads, you can find it in the frozen food aisle. Not to re-open this can of worms, but like many other gluten-free breads, this particular kind does not fortify with iron or folate, sadly. To recap: taste - regular, normal, nothing special. Texture - very special! Plumbago
  9. Thanks everyone. I did call, but as it turns out "gluten free" was written in the tiniest print on there, which I had completely overlooked. Gelatin is an ingredient, and that was why I was concerned. Plumbago
  10. The link you provided is for steroidal treatment for refractory celiac disease. I thought the context of our discussion was steroid use for asthma and its possible effect on a Celiac panel. For refractory celiac disease, the treatment would be oral (systemic). Steroids for asthma and refractory celiac disease are not delivered by the same route, which can make a difference. One of the rationales for using inhaled corticosteroids is to minimize or even avoid systemic effects. The most commonly listed side effects of inhaled CS are: oral thrush; dysphonia; and hoarse voice. To minimize these effects patients are taught to rinse the mouth. Even better is to use a spacer - there's less chance of systemic infiltration. However, as discussed, it is possible a systemic reaction and side effects can occur. But in general if we are talking about steroid use, the route (as well as dosage and how long it's been used) does matter. Plumbago
  11. Good link. Interesting that it didn't specify type of steroid use. Plumbago
  12. That's a good point. Though the patient is supposed to be on the lowest dose possible of inhaled steroids and although steroid use for asthma is technically a local medication, it's possible for a systemic reaction to occur and definitely worth checking out. Also the association between asthma and celiac disease is supposedly strong, and something you've no doubt thought of by now. Once all this is settled and if your child does end up on the gluten-free diet, it will be interesting to hear what happens with his asthma. And finally not to get too inside baseball, if you do end up going with a small intestine biopsy, it may be worth checking with the medical team to see what his immune status is, as I've read that immunocompromised individuals may need prophylactic antibiotics before invasive procedures. Plumbago
  13. Corrie, Why not just get them to run a CBC, metabolic and lipid panels if your insurance covers it? If doing testing for Celiac, I can see that the other three panels are justified. Usually my doc runs those as standard anyway with my physical, ok I'm older but still. If you get all four panels run (including the Celiac one) you should be covered for things like calcium and iron, two other common deficiencies with celiac disease. The list for manifestations of celiac disease is long and does include things like low cholesterol. (That is a link to what to get tested for. Link says it's for adults) Running all those panels/labs just provides good clues as to what's going on, and gives you much more to work with IMO. The whole discussion about Fasano's criteria is maybe not something I want to wade into partly because I thought you said your son is symptom free. Also as you noted, there is of course silent Celiac and the whole concept of the Celiac iceberg, which Fasano has talked a lot about as well, if I recall correctly. The leg pain - one thing I was wondering about was B12 deficiency, but as you say it could be D. As you no doubt know, abrupt discontinuation of steroids can lead to adrenal insufficiency, but I've always read that regular use of inhaled steroids should not lead to growth insufficiency, but maybe the idea was to just encourage people to take them regularly, since preventing an asthma episode is easier than dealing with one once it's started. Cortisol breaks down muscle tissue and bruises and striae may develop. There are a host of other side effects, but docs have gotten much better at knowing the right dosage to take.* *Too much cortisol breaks down muscle tissue I should have said! I just found this link: "Inhaled corticosteroids may suppress growth in the first year of treatment in children with asthma, but lower doses may minimize the effects, according to findings of 2 systematic reviews published online July 17 in the Cochrane Library." I like medscape a lot. Good luck. Plumbago Added: Seems the fat soluble vitamins are important ones to get tested. Here's an article with a few comments on what vit and minerals to get tested for:
  14. Your doc and nurse should be curious about that leg pain. I've read about associations between asthma (usually severe) and growth issues in children, but I don't know enough to say why this could be, other than any time a major organ is involved there are often growth issues, and then the steroid use, but inhaled corticosteroids are usually not a factor in growth, and after systemic corticosteroid use ends, growth resumes. Otherwise, as you say, both of your child's parents have short stature, so there may be zero cause for concern. I agree with the cyclinglady, that before diagnostic blood tests, you do want your child to be consuming gluten for sure. Otherwise, I have a very good book that says it may be possible to do an ultrasound of the small intestine wall. The book is Recognizing Celiac Disease: Signs, Symptoms, Associated Disorders and Complications by Celo J. Libonati with a foreward by David M. Capuzzi. If you are going to a nice Celiac center (lucky you! I hope you learn a lot) you may just ask them about the small intestine ultrasound. Please keep us informed, if you wish, of what happens. Plumbago
  15. Hello, You didn't say what age your child was. I understand your fears that the docs will just want to do the small intestine biopsy. That is probably true. However, if he hasn't grown in two years, is it possible that - if he has celiac disease - he's had it for a while now? Again, because we don't know the age, I can't tell the normal growth rate of children that age. There are ages when growth rate is slow (for everyone, on average). So it looks like he tested positive for one gene, but not both, right? According to a video I watched By Dr Hasan Hasan from 2011, it seems both must be present for a positive diagnosis ("the deamidated gliadin has high affinity to HLA2 and HL8 which you have to have if you have celiac disease"), but our knowledge is expanding or being corrected all the time. And I may be wrong. Please double check. As for the labs: Immunoglobulin A: 137. (Range 71-397) Transglutaminase IGA 8.0 (negative < 4.0, weak positive 4.0 - 10.0, strong positive >10) The first one. The reason this test is done is to see the total levels because some people are IGA deficient which can be cause for a false negative result. People with celiac disease suffer from low total levels more frequently than the general population. tTG-IgG (transglutaminase immunoglobulin A), the second one - this enzyme deamidates gliadin which is a broken down component of gluten. In reaction to the presence of TTG, the IGA is produced. Raised IGA indicates short term immune response - 2-4 weeks -to presence of d. My notes say that this is not a 100% specific, that there are other causes of a positive TTG IGA test such as diabetes, heart failure, Crohn's and others. Transglut AB IGG 3.6 ( negative < 6.0, weak positive 6.0 - 9.0, positive > 9.0) This test measures long term immune response to gluten (3-6 months sometimes up to a year preceding the test). Why this was negative if the TTG IGA was positive is not something I can explain easily or at all. The last two tests basically are looking for reaction to gliadin. Maybe you know all this. They didn't do EMA as you said, wihc is specific (>95% and >90% sensitive). According to my notes, "EMA antibodies correlate to degree of villous atropy." One thing you could do is call them back up and be firm and request the EMA. People are going to tell you different things. I myself don't have much experience dealing with children, but it's a critical time obviously. Off the top of my head, the only thing that occurred to me is if you don't want to do the biopsy, then you could just start now to eliminate gluten and see how that goes. There are many necessary vitamins and minerals added to bread products with gluten, so just be aware of all that if you do go gluten-free. Plumbago