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tri-gal

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Everything posted by tri-gal

  1. tri-gal
    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...
  2. tri-gal
    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...
  3. tri-gal
    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...
  4. tri-gal
    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. tri-gal
    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...
  6. tri-gal
    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...
  7. tri-gal
    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...
  8. tri-gal
    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...
  9. tri-gal
    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...
  10. tri-gal
    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! ...
  11. tri-gal
    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...
  12. tri-gal
    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. tri-gal
    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? ...
  14. tri-gal
    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...
  15. tri-gal
    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...
  16. tri-gal
    Hi Littlemama, A quick note for now and I will try to post more later. You mentioned FPIES and celiac, so that caught my attention. IMO, I think you should go for the diagnosis while you can. I would also re-do the IgG test since the lab lost the blood or the report (how does this happen, yet similar things happened to us!?) And, yes, then try gluten free...
  17. tri-gal
    thanks for sharing your experience, that's really good context. I must say I'm quite impressed that your 13 year old has decided to stay gluten free based on improvements; sounds like a mature fellow because there must be a lot of peer influence and opportunity to take the other path. Wow. So, my update is that we saw the pediatrician yesterday. She...
  18. tri-gal
    oh yah, And coming back to the EMA question, I really don't know if it is redundant with the tTG or if some people could show EMA without being picked up on the tTG. I wonder if someone knows the answer to this, because that would suggest: may as well do them all if you have an at risk patient or a reasonable suspicion of celiac disease.
  19. tri-gal
    It really seems that the medical community is confused by the lab tests available, how they differ and what to order and when. I faced this exact issue yesterday with doc not being even aware of DGP or if it is available, so I pointed to it in hard copy report of world gastro report that someone posted the other day (THANK YOU). I said it is supposed to...
  20. tri-gal
    Thank you for the info and advice on timing! I have now booked an appointment to raise the issue with her ped doc today. I decided at least to move forward with a conversation as she had another couple of episodes of steatorrhea, alternating with const days. Then a day of feeling nauseated and not wanting to go to school (not her at all). Could be something...
  21. tri-gal
    Thank you very much for your reply, greenbeanie. that was very helpful for me to learn about your experience. I think we can manage another week or two on gluten. Probably worth it so I can accept the results if they are neg. not that I want it pos, but there is always the doubt factor if we don't allow the proper time on gluten. hope your daughter is doing...
  22. tri-gal
    Please help me decide when to test my daughter. I am struggling with the decision, in that she never went completely off gluten but went gluten light for 10 months. Do I really need to put her through 6 weeks full on gluten or is 3 sufficient since she never completely stopped. I am anxious I'm destroying her development. family context: I am an undiagnosed...
  23. tri-gal
    Hi, just to respond to the q on dental issues: yes, enamel issues can be a sign of celiac., I have researched this as my dentist is completely clueless about celiac and every time I raise it (like this morning), he shuffles backwards out of the room and charges me some horrendous consultation fee. grrr. Anyway, yes, reported effects include: discolouration...
  24. tri-gal
    First, I am so very sorry that you are going through the loss of your son. My sympathies to you. In terms of your question, my view is that if you are eating proper meals with little change from your former diet, you should investigate the cause of weight loss, including the celiac disease possibility. celiac disease, while being genetic in predisposition...
  25. tri-gal
    Based on my direct experience, absolutely. Celiac and gluten were not on my radar until they forced their way on. I had a similar experience to others: my bf baby had what might be called colic, terrible gas, bloating, screaming, obvious intestinal pain, regurg (not spit up because he needed to burp, but curdled milk vomit), eczema. Upon intro of solids...
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