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MitziG last won the day on January 11 2015

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About MitziG

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    Dx via blood and biopsy April 2011, two kids dx at the same time
    Dx with Interstitial Cystitis April 2011
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  1. Hi all, haven't been on here in a few years, because all was well and celiac wasn't on my mind so much as when we were first diagnosed back in 2011. However, my son (13) is once again suffering, and I don't know what is up. About a year ago, he developed the same type of abdominal pains he initially had, along with concurrent depression and anxiety. He lost about ten pounds, the ever present ridges and pits in his fingernails worsened considerably, and he vomited after eating solid foods. Got into the GI who did blood work. Ttg was slightly elevated (29) so we figured he must have gotten cross contaminated somehow, buckled down on cutting out gluten-free processed foods and tried to wait it out. Also an x Ray showed mega colon, so he was put on miralax for a few weeks. (Also, just an fyi, there is ZERO chance he is sneaking. He is TERRIFIED of gluten, to the point that he won't eat outside the home, and is phobic to the point of ridiculous (for instance, if somebody moves his glass he will dump it out because he is afraid they might have touched it with gluten hands....despite the fact that we have no gluten in the house as myself and DD are also celiac) Three months later, symptoms continued, went in for a re-check. Ttg now just a few points higher than before- DGP was negative (was during the previous test also) So, Dr suspects maybe Crohns. I should mention, son has also dropped from the 65 percentile in height to the 20th, is mildly anemic (11.2) (despite iron supplements) and is just a tiny bit low in zinc and copper (also takes a liquid multi) Dr seems to disregard all of this as unimportant because it isn't severe. Also, his iron levels actually are normal, ferreting is at 54, so the drop in hemoglobin signals something other than iron deficiency is responsible. I pointed out that previously, his hemoglobin was 14.5, and his Ttg held at zero for several years but he kind of ignored that as meaning anything. So, next they do a fecal calprotectin test for Crohns...comes back negative. Then all of the sudden, symptoms disappear, perfectly fine, for two months, so we dropped it. Now, about eight weeks ago, they returned. Vomiting after eating, constant pain, dropped another ten pounds. HG still about 11, but now white cells are quite low also, never an issue before. Dr orders a re-test, however, son suffers an allergic reaction to the nausea meds he was on, and the second CBC was done in the ER, now showed white cells as being slightly elevated (which would be expected during an allergic event!) However, Dr now says nothing to worry about because they obviously aren't low. Dr orders a HIDA scan, comes back negative. Son continues to lose weight, can't keep solid food down and becomes seriously neurotic. Super anxious, depressed, obsessed with his health. He definitely has some somatic symptoms, but the won't blood work, pitted nails and stunted growth tell me that something is genuinely wrong. Last week, they did an endoscopy and colonoscopy- visually everything looked normal. Took 8 biopsies and removed a small polyp from his colon. Scheduled to see Dr on Wednesday to discuss pathology report. I am able to log into their system because I work for a doctor, so I have already read the report. Most of it was normal. Only thing it showed was "mild chronic gastritis with follicular features" and the polyp was classified as an "inflammatory polyp." I'm pretty sure when we see the GI he is going to dismiss this as mild gastritis and tell him to take omeprazole (we already tried that last fall. Didn't work.) I did some googling...inflammatory polyps seem to exclusively be associated with Crohns or Ulcerative Colitis....but they also present as multiple polyps from what I can tell. He only had the one. The "follicular features" of the gastritis can be attributed to multiple things (H Pylori- that test result isn't in yet) Celiac, Crohns, autoimmune gastritis.... I just don't know how far to push this. I don't want to be one of those people that tells the Dr how to do his job, or to over react to labs that are only slightly abnormal. And I do know that it is likely his symptoms are largely somatic. My gut tells me that there is a more going on than mild gastritis. Dr is at UVA, I should mention, so supposedly he knows what he is doing. But then, I had a GI at University of Iowa insist Celiac wasn't genetic, so..... Anyway, sorry for the very long post, I appreciate anyone's thoughts as to what is going on. Is this a celiac flare? Something else?
  2. I think it would be totally doable. They rely far less on processed foods over there- having fresh whole foods at meals would allow for a lot of options. Her hosts could just be advised of her needs and maybe allow her a spot specifically for her food prep.
  3. The hiatal hernia may very likely be responsible for your bad breath- basically it is letting all of those nasty gut chemicals be expelled through your mouth. Yummy. Depending on when and what you have eaten may affect why your doctor said it was not halitosis. Anyway, a few recommendations... #1 fix the hernia...easy peasy, you can find diagrams online, or ask your chiropractor to do it. Think the heimlich maneuver, but with steady, even, upward and inward force for several minutes. I was astounded that I had been walking around with this visible bulge that looked like a ball of protruding fat for two years, when all it took was two minutes of pushing on it to go away! #2 Get a high quality probiotic. Important for celiacs anyway, but very helpful for maintaining healthy gut flora, which will do their job to break down your food rather than let it rot and stink. #3 If you aren't a flosser, start. That tiny little bit of gunk trapped between teeth can REEK #4 Are you on any meds that cause dry mouth? Switching meds or using biotene paste and wash and chewing gum like mad will help. #5 Therabreath, as someone else mentioned #6 As far as body odor...I have read alot of speculation that it can be a result of food intolerances and/ or excess sugar consumption. I don't know if it is true, but if you continue to have trouble nailing down the source, it is worth looking into. I had halitosis my whole life...right up until my celiac dx...gluten free meant halitosis free for me!
  4. Oh SMH the idiocy of doctors never ceases to amaze me. With a first degree relative with celiac, your chances are 1 in 12. Throw in your symptoms, a questionable biopsy and a positive ANA and you might as well be waving a red flag at them. Sigh. Hope by now you have gotten some answers. I am so very sorry about losing your baby. How awful. Stories like yours are all the more heartbreaking when you know it maybe didn't have to be that way if more doctors were on the lookout for celiac. In my opinion, EVERYBODY should be screened. So very angry for you!
  5. Have you found anything more out? I see your post is a couple months old. If not, was just going to ask if they did an EMA test at all? A positive EMA would definitely mean celiac. My only idea for the increase in ttg is that the disease is continuing to progress because he is getting cross contaminated by gluten. If you have gluten in the house, it is really easy to do. He could also be developing increased sensitivity- meaning his immune system is reacting to levels of gluten considered " safe" for most celiacs (most packaged gluten-free food falls into this category. Has to be 20 ppm or less to get a gluten-free label, but some celiacs cant handle 20ppm) Lastly...does he eat oats and dairy? Many celiacs will have an immune response to them due to the proteins being similar to gluten. If you have cut out gluten but he is loading up with the other two, that could be your problem. I hope you get some answers!
  6. Also, constipation is a hallmark of celiac. My 11 year old was on laxatives from 2 months until he was five...because he was undiagnosed and I didn't know any better to ask about celiac. He was BREASTFED and constipated..that just doesn't happen unless something is really off. They just didn't bother to find out what it was. Gave him acid reflux pills for the spitting up and laxatives to poop treated the symptoms because they were too lazy to look for the cause. Makes me madder than words can say because he suffers permanent issues because of being undiagnosed for 6 years.
  7. No doubt about it, sorry. Your daughter most likely has it also. Low positive is like being "a little bit pregnant." You can actually have massive intestinal damage have completely negative blood work. She needs an endoscopy done pronto. If you want to put your son through it, keep in mind, celiac can be easily missed with an endoscopy. The intestinal area is the six of a football field, and celiac can show up in small patches. Biopsies ate hit and miss. A negative biopsy doesn't mean he doesn't have it, even if the GI tells you that. You will find more knowledge on this board than a hospital full of doctors. His blood tests are undeniably, indisputably positive for celiac, and if you put doubt in his mind about that, you are doing him a great disservice.
  8. Curious to see what you find out. He certainly can have a negative panel and still be celiac. I would push for an endoscopy.
  9. Your ttg is positive, dgp negative. Ttg is generally Celiac but can also elevate with other autoimmune disorders. If you get a positive EMA then you have celiac. Gene test is controversial at best- if you have the genes or makes it more likely you have celiac, that is all. Glad you are finding a more knowledgeable dr.
  10. SMH it is Drs like this that drive me bananas. Stupid GI and he doesn't know what to look for. #1 Positive EMA = celiac. Period. #2 Celiac can not be diagnosed with a colonoscopy. He is either dumb or just wanted to bill for an extra test. #3 Celiac is easy to miss in a biopsy. It is often patchy and many drs only take one or two samples...which I would bet money is the case. Minimum of four should be done, but 8 is better #4 He diagnosed lactose intolerance because the tips of the villi showed damage. That is where the enzyme necessary to digest lactose is made. Know what causes the tips of the villi to be damaged? Celiac! Argh. Get another GI, pronto.
  11. You have celiac. Your low IGA is causing false negatives most likely. Dgp test I specific only celiac. However, having a diagnosis is helpful because without having it, doctors wont take you seriously when you say you need to be gluten-free. If you are hospitalized, you may not get to order from a gluten-free menu without a diagnosis. Many times it will be important, so try to get it. Your biopsy is indicative of celiac as well. Either they missed the worst area or you don't yet have significant damage, but the scalloping of th e duodenum combined with the positive dgp is a slam dunk.
  12. Alot of celiacs will react to dairy in the same way as gluten. The proteins look similar and our immune systems often think they are the same. Joint and body aches are really common with both.
  13. Alot of celiacs will react to dairy in the same way as gluten. The proteins look similar and our immune systems often think they are the same. Joint and body aches are really common with both.
  14. Word of advice when it comes to prepared to tell, not ask. Most of them (even GIs) don't know diddly squat about celiac. Spend a few hours on this forum and you will know more than they learned in medical school. Be your daughters advocate. She almost definitely has celiac and don't let them convince you otherwise. Also, the biopsy, BEFORE she goes in, make sure that they take a minimum of four biopsies. Celiac is often patchy and easily missed. Also make sure they di an endoscopy, NOT a colonoscopy. (lot of really dumb GIs out there!)
  15. Of course you can taste gluten! It is called DELICIOUSNESS. Gives it away every time for me. As in, "Wow, these enchiladas are soooo good I cant believe these are corn tortillas!" They weren't. Three days in the hospital, months of pain afterwards. Something being delicious makes me highly suspicious now.