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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About tri-gal

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  1. good news: he received the referral. Apparently the doc was concerned there wasn't sufficient justification to refer my husband. when my husband pointed out the positive result he said ok, just that most people don't want an endo (weird). I suspect the doctor either did not review the results properly or understand the implication of them. At least the discussion led to a proper referral. Also, my husband has a low platelet level which the doctor says is "normal" (?) ..."yes it is below normal but not worryingly so". hmmm.
  2. Thank you for your responses. It has taken this long to finally get the doc to call back! Indeed, he did ask his doc for a referral, right after we had feedback on the forum, and it has taken this long for his doc to call him back (several attempts later...) His doc does not want to refer for endo. Appointment tomorrow to discuss. Any suggestions? We are printing the lab info that says the sensitivity of their test is 65% whereas the specificity is 97%, therefore considered highly functional as diagnostic screening tool. Any ideas on how to handle this as we don't want conflict but we do want the assessment. thanks again for taking the time.
  3. Thanks for your response. This was my sense too, yet his doc was not concerned and only provided results when my husband asked for a copy. My husband ate some gluten for around 8 weeks prior to the test, not in great quantities, but probably equivalent to a couple slices of bread a day. He had been gluten light for about 10 months prior and had experienced improvements in stool issues as well as irritability.
  4. My spouse has just had a blood panel done due to relatively mild but potential symptoms. His DGP IgA came back at 10.1 with normal for lab at < 10. All others were normal (DGP IgG and TTG IGA). Doc interprets this as normal, no need to worry. Views on whether my husband should pursue endo or just take it as normal.? thanks!
  5. Hi Ruth, I totally understand your need to obtain the most accurate information and complete picture, particularly for your children. It seems to me that the methodology and potentially level of detail provided for the genetic testing will vary (by lab as well as blood vs swab). We went the swab route as it was something we could do on our own relatively expediently. However, it does seem to me that there must be a reason that practitioners / hospitals etc would go the blood route. I think only someone who knows the methodologies can answer why. If you can consult an expert on the best testing approach, I think that would be best so there is no second guessing. The other point that comes to mind is that you may not need extra (e.g. alpha) info now, but lets say in a few years, there is more detail on the role etc. etc.... or let's say you land in an unknown area. However, it might be more costly and maybe it yields the same info, but that's where an expert opinion could help. You've seen the other discussion on DQ9, DQ7 typing on your other thread and some views that it can't be, and some views that it could be.... predisposing. I've looked up other info and it turns out that DQ9 is rare in Caucasions to begin with (ie. rare in the general Caucasion population never mind the Caucasion celiac population), and there is very little data.... but based on some studies, it could indeed be celiac predisposing. Only mentioning this as an example that no test is ever as straight forward as it seems at the onset (and because the lack of conclusive answers has been eating away at me too) . In summary, my two cents are to go for the gene tests, but in consultation with an expert who can get the fulsome picture that you won't have to agonize over on your own. I wish you luck whatever you decide.
  6. My daughter is on the gluten challenge because her symptoms are vague and to the outside world she seems "fine". However, she has enamel issues and intestinal issues, and other vague symptoms that cause me to want to seek a diagnosis now rather than wait. (It all sounds a little like BlessedMommy's situation, I think). For myself, I had terrible onset of symptoms post-partum which resolved gluten free (I also had missing enamel from childhood, late menses and other signs from then). I went gluten free to help my nursing toddler who showed very obvious problems with gluten. thus, I am now on high alert for my kids. I don't want my daughter to have celiac disease, but I do want the correct diagnosis, if I'm going to be worrying about every crumb in her diet and setting her up gluten free for life. As for my query on swab gene tests, I was wondering if swab tests are as accurate as blood tests? in terms of being able to see the genetic structure as readily (not a question of missing a gene, per se). I don't know how they are done, but presumably, the cells are examined under a microscope.
  7. Interesting discussion! A question for IrishHeart to round out the discussion on the utility of gene tests....and the slight chance of having celiac with non DQ2 or DQ8 (RE the "rare" person who could have celiac without DQ 2 or DQ 8....) What I had come across was some primary research published in Oxford Journals, April 2000 International Immunology ("The structure of Celiac Disease...epitopes"). and some primary research in 2012 (from Norway, I'd have to look it up again and I still haven't figured out the cut and paste function!), both suggesting DQ9 could potentially be celiac pre-disposing. I realize these were not definitive, but still worth keeping an open mind about IMO. So I'm trying to understand. My take had been: if you have celiac, you most likely have Beta DQ2 or DQ8 or both, but there is a chance (albeit small, if 1% is small - hey, that's about the same rate as celiac occurs in the general population!), you could have other genes such as DQ 9 and maybe even DQ7, or that perhaps your Alpha typing should have been reported (?). It seems plausible to me that there is still some more to the genetic story and that possibly DQ9 could play a role, given how similar the structure seems to be to DQ8. I'm not pretending this to be my area. But, I raise it because as soon as it is said "impossible without DQ 2 or DQ8, the rest of the conversation gets dropped. I also wonder: how reliable are the swab tests? Are these highly observer dependent? Nothing is ever a perfect answer, but personally, I'm not ruling it out based on a DQ7, DQ9 typing in either my daughter or myself. For our part, my daughter will go for blood tests soon once she completes the gluten challenge, and a scope if required. It will be interesting to see what transpires even tho' she is said to have DQ7 and DQ9. Curious what course Ruth pursues.
  8. Do you think your doc will deny your daughter the test if you go now? If so, your suggestion is a good one. Or, if you want to fork out the money, you could try the fecal tests and gene tests. I think the gene testing is worth it, particularly if you struggle with the frustration of lack of diagnosis, as I do. On the other hand, as it is not diagnostic, it has its limitations and in the end, does not really help if the doc does not want to listen. This is what happened for us: I went through similar thought processes, so I actually pursued gene testing. The results were that my daughter and I both have DQ 3, 3 (subtypes 7,9), as reported via mouth swab test. These are not on the conventional lists of "main celiac" genes, but again this phrase is misleading. It turns out that "main" simply means "most common", and research suggests DQ 9 (DQ 3, sub 9) may indeed be a celiac predisposing gene, as well as DQ7. However, I now realize that I can't really present this to the docs and say "see"? because they might not know about the research and they will fall back on the most frequently cited headline, which is DQ 2 or DQ8. So, you could try that route, but in the end, it depends on the open-mindedness of the doc to consider the case. I find it silly that it is so hard to screen a child with symptoms who has a parent with a history. Be sure your daughter is getting that gluten and then insist on a requisition. I am keeping my fingers crossed for you. We've found it hard here and I am really eager to get this over with as a 2 to 3 month trial drags.
  9. Hi Ruth, I can relate to your situation, with a almost 6 yr old daughter showing signs and being non-Dx myself, unfortunately. I was afraid of the brush off from my daughter's doc, but to my delight, I succeeded in getting a requisition (she does not see my doc). n your shoes, I would go to doc and push for requisition. Here is what we did: For my daughter, once my suspicions reached a new level, I broached the subject with her dentist. The dentist said her enamel issues could be systemic, but they were not diagnositic. Yes, proceed to discussing with doc. So, I made a list of points, including "dentist said" and asked for a requisition. I put the whole story on the table, and doc agreed to issue requ. I also wanted B12 check, but she did not give that saying, it is rare for a problem (I have had this and my daughter gets similar signs). Gluten challenge: My daughter's doc, to her credit, looked up some info and came back and said, now recommending 8 to 12 week gluten challenge (as my daughter had been gluten light for 10 months). Two bread slices, we were told. Meanwhile, my husband and I had decided to pursue lab testing for her. Partly, because we wanted to be sure we wouldn't get a "false negative" blood test and have the door permanently shut. We went to EnteroLab and now have results for her which all are v. positive, including the auto-immune tTG test. I find the stool tests have given me the info to know that we're likely ready for serological testing, without risking false negative. It is a bit expensive but that was where we landed given my non-Dx and the challenges of Dx generally. best wishes and good luck.
  10. Dish Soap?

    Funny to see this thread. I was not concerned about soaps until the other day when my toothbrush had a dreadfully strong hand soap taste. Yuck! It turned out that my little girl had decided to help clean the bathroom, so she had doused all the toothbrushes in liquid hand soap. I checked out the label; no mention of gluten but lots of other garbage! I found it sort of weird to be checking the soap (why would they need that anyway?) but you never know. I was glutened around that time, but I think it was a cc issue, or trace amounts from non-dedicated lines in corn chips. Tisk, tisk.
  11. thanks for the suggestion. maybe bulge is the wrong word. But it's good to raise other possibilities, and I know what you mean as women can get abdominal separation quite commonly too. In my case, when inflamed, my intestines contract and swell. It is definitely intestinal - I get accompanying intestinal upset and problems down under. Doc has historically called it IBS. I think this "flare" may be a glutening after all as now I've developed my migraine too. I didn't give my full history, but I'm quite certain to have celiac based on my symptoms going back to childhood and then severe onset after last child, birth being a known trigger for severe onset: intestinal pain, fermentation, ballooning, malabsorption, low iron, b-12, folate, unflushable, sticky tar, rapid weight loss, migraines, balance, fog, itch, mouth ulcers, to top off my teeth missing enamel since child hood and lack of menses until 16.anyway, now I'm just trying to sort out why I get these episodes of inflammation, (Crohn's comes to mind), but I think it is a cc issue.
  12. Thank you. Good point. I have edited down my post as I realized I was getting way too far into medical issues. I've decided to see if the intestinal aspect is something others experience. thanks again - you are right.
  13. I am non-dx, and have been gluten-free for 11 months, with resolution of symptoms. However, I have been experiencing either flare ups or some other issue with my intestines. I often get this bulge around my belly button area, mostly on the right side, just below. Could my intestines be inflamed? Would a colonoscopy be useful or an elimination diet? thanks so much.
  14. sorry to do this in a second reply, I don't know how to "multi-quote" yet.... but ., to follow up on the question of a potential link between FPIES families and celiac disease families.... is it possible to tell me whether your son had classic FPIES (you mentioned rice, oats, soy, milk)? As in: severe vomiting and lethargy approx 2 hrs following ingestion of FPIES trigger, followed by explosive bowels/diarrhea and intestinal pain for several days. www.iaffpe.org Or was it that the medical community said: "maybe he has FPIES" but they weren't sure, but he did not present with classic FPIES vomiting reactions on food trials.? hope this makes sense. A few distractions going on in our household.
  15. okay, could be if he didn't have clear FPIES to non-gluten items. Our case is quite clear. The FPIES was and is definitely classic FPIES. To rice, chicken and potatoes so far. But our son also has enteropathy to gluten, but his intestines are much better now that he is gluten free. For this reason, I wonder if he actually has celiac disease. But the FPIES remains a separate issue so we have to be careful on food trials. given my strong likelihood of celiac disease, I wondered if there is a connection, not so much meaning to say that he didn't have FPIES but whether there is a link between celiac disease families and FPIES families.