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About Ottonegirl

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  1. Thanks so much for the responses! I really appreciate it. Lyme may be one of the few things my dd hasn't been tested for. We do know, though, that her red blood cells do not destruct & live the expected time frame. I searched the thread you were talking about (but there were 13,000 replies) & never found the person with lyme - could have missed it. I don't believe she's IgA deficient - all I know is that she cannot be tested using skin tests for allergies because she has dermagraphia in addition to chronic hives. Since we would be paying out of pocket I was trying to go cheap - but, I know she's never had the antibody tests done since she'd had the biopsies. They were recommended by friend - to see if she'd even have a propensity in the celiac direction. Plus, we thought that if they came up positive that she'd be way more apt to be willing to try the diet. This has been my thought - the only symptoms that she has that point to celiac are that she tends to be VERY gassy & she's pretty skinny for her height & has been for years - but, she doesn't look undernourished at all. This is the issue for us - we do not want to put her through anything else without her buying into it 100%! She's heard Drs repeatedly tell her that there's still a chance it could be crohn's but there's no chance it could be celiac. I'm sure it could benefit her to be gluten free - it does me, but I have lots of food allergies which she doesn't have - yes, she's had a very thorough allergy work up too. Hmmm.... so, without paying for the entire panel it probably wouldn't be worth the testing. Then, because she's not really symptomatic it might not be worth even doing the testing... I'll have to give this some thought. I think that I would love to find the source of the issues & fix it! I don't want to put her through anything else though unless it's warranted - she desperately wants to just be a normal kid. Thanks again! Karen
  2. Hi everyone, I am pretty certain that I am going to order the Enterolab genetic celiac panel for my dd. But, I'd love feedback on whether you think it would be a waste of time or not. Here's her story: 4 years ago she presented with anemia (at age 11) - her lowest HgB was 8.2. She didn't present with iron deficiency for 3 months so she was tested for hematological disorders all of which came back negative. 3 months later, her MCV dropped low & her iron #s were checked and she was now iron deficient. She was put on high doses of iron & transferred to a GI doc. She had 2 meckels scans, upper & lower endoscopies, capsule endoscopy (which showed some mucosal thickening) & a CT scan with contrast. All biopsies came back negative. She was kept on iron for a full year. At the year, she was pulled off & she was watched. For 9 months she remained stable & then was released. Fast forward 9 more months (April 2008 & she's 14 yo now). She was rushed by ambulance in shock to Children's. Her HgB was 5.9. She was hospitalized for 12 days. Once again, she does not present with iron deficiency (normal MCV & iron studies) although her ferritin is less than 5. GI docs think she has a hematology disorder & the hematologists think it's GI. After days of testing & arguing, they decide to scope her again. An NG tube is inserted & coffee ground blood comes out during the clean out. The hematologists cancel her bone marrow biopsy because of the blood, but GI docs don't necessarily believe that it's caused by what's going on with her - could have been an NG tube injury. Once again, upper & lower endoscopies come up negative. She is scheduled for exploratory surgery & her entire small intestine is removed & examined manually (2x). They find nothing. During the hospital stay the anemia was treated with a blood transfusion, 7 IV iron infusions & 5 epo shots. She left the hospital with a ferritin in the 200s & a HgB of 10. 2 Weeks after her release from the hospital, she has a capsule endoscopy. The GI doc (not hers) who did it saw several ulcerations in her stomach that when touched would bleed profusely. He cauterized them but didn't biopsy because he didn't want to compromise the capsule (huh?). He assumed she had h. Pylori, but all tests came back negative. The capsule showed a bloody region in her lower small intestine. She was then transferred to Stanford for a 2nd opinion. The GI docs there do not believe that she has a GI issue - the blood in their opinion was a NG tube injury. She had a small bowel MRI w/contrast which showed no scarring in her small intestine, a small bowel follow-through, 2 upper endoscopies, 1 capsule endoscopy & 1 lower endoscopy. She also had a Crohn's panel done which came back negative. While there she sort of had a bone marrow biopsy but they weren't able to get any of the spongy tissue so the results do not include genetic tests. It was negative. Stanford ended up saying it could be GI but they're not sure. So, dd's original GI doc's theory is that dd has a small intestine AVM, which causes chronic bleeding (draining her ferritin constantly) & massively bleeds occasionally. I think this is very likely. Dd lives on iron & is always tired. She sees her GI doc every 6 months, has bloodwork done every 3 months, but is on a standing order in case we think she's dropping a lot. The big concern for her isn't the chronic issue, but the potential for another major bleed, which is likely over time. So, even though dd's had 5 negative celiac biopsies, I've stilled wondered about celiac. Do you think that there's any chance that she could have it after the GI work ups that she's had. I don't mind doing the cheek swab - it's fast & easy. Would love any feedback. Thanks!
  3. Thanks! That's so helpful - I'm going to take time this afternoon to read through everything! Karen
  4. Thanks everyone - I actually am excited! I have hope that this will change my life! All those years doing the yeast connection diet & feeling better & then going back to eating normal & then feeling worse were so frustrating. All along I'd attributed all my symptoms to yeast without realizing that I was also responding to the gluten-free part of the diet. I think initially it dealt with the yeast portion - but I needed to stay on for the gluten issues & didn't realize it. I'm a little overwhelmed with the "hidden" ingredients issue but am reading & making lists. Like anything I know this will become normal. Thanks, Karen
  5. I thought I'd update. Over the weekend my legs swole up like balloons & that was the final blow for me. So, I saw my Dr yesterday to talk about the issues I've been having & she said that she wants me to go gluten-free immediately. Her opinion was that with confirmed wheat allergies (blood tests & skin tests) in addition to all my symptoms that I was definitely gluten intolerant & possibly celiac. Because I have eaten gluten-free sometimes she doesn't trust the blood tests or biopsies & feels that because I've responded to the gluten-free diet in the past that this is proof enough. I agree. She also said that she's seen lots of celiacs with weight gain because when a person isn't getting the nutrients they need they will try to eat more to fill the need. We discussed that whenever I ate gluten-free I lost weight & that when I ate normally I gained weight. I feel relieved & the confirmation that I wasn't making a mountain out of a molehill was wonderful. I may still do the Enterolab tests, but not feeling that they're all that necessary at this point. Looking forward to feeling better soon! Thanks for answering all my questions. Karen
  6. Thanks everyone - I'm beginning to get a handle on this. I'm thinking going Entero lab sounds like the best for my family. My daughter has been biopsied & got a negative result - she'd only been back on gluten for 5 weeks when she had the biopsy. I know her GI doc won't run the blood tests & therefore, her pediatrician won't either. I've already been diagnosed with Irritible Bowel & have been on & off gluten so much over the past 6 years that I'm not sure the bloodwork would show anything. I do know that I'm allergic to wheat & milk... just need to find out about all gluten. It would definitely be worth it. Then based on what we find, we'll decide whether to test the rest of the family. I'm pretty certain that everyone is having issues just not as severe as my daughter's & mine. Thanks again for the info & encouragement.
  7. Well, I know I'm allergic to milk too... I always stay away from it (almost always ) & eat goat's milk yogurt. I'm OK with the goat's milk yogurt so I don't think it's casein - just cow's milk. This has been an ongoing problem - years of it. I'm thinking that I'll test my daughter & probably just go gluten-free & keep my goat's milk yogurt & see how I feel. If I see the improvement from before, it will be worth sticking to it! Thanks for the help,
  8. I'm new here - just joined yesterday & posted about my daughter. Now, I have questions about me. I'm wondering if I could have celiac - the more I think about it the more it seems like it really could be. So... here's my history (could be long sorry!) I was extremely sickly as a child - allergic to everything. At 33 had 1/2 thyroid removed for benign thyroid tumor After that, lost tons of weight & was dx'd with MVP syndrome, Irritable Bowel & Fibromyalgia Because I still felt terrible & was having yeast infections I went on the Yeast Connection Diet & felt the best I'd ever felt in my life (it's gluten-free/cf) After about 6 months on the yeast connection diet, I reintroduced gluten & casein & have gone back to feeling terrible again... Over the past 6 years I have repeated this process over & over again. (I'm a slow learner ) I've had CT scans, ultrasounds - had my gall bladder looked at - all for abdominal pain with negative results and the radiologist accused me of being a hypochondriac. Lovely... Here are the symptoms I'm currently experiencing: Foamy diarrhea & then bouts of constipation Steatorrhea Abdominal pain Excessive gas Iron deficiency anemia Extreme tiredness Tingling sensations throughout my body (not just extremitites) like mini-electric shocks swelling in feet during summer headaches joint aches In the past, when it all started up I'd go back on the Yeast Connection diet & would start to feel better - connecting it with yeast ... but now I'm thinking that this could be celiac. The only problem is that I have struggled terribly with my weight since I had thyroid surgery - up & down and up & down. I'd always ruled out celiac because of this... but, I've heard that I shouldn't. Can you be overweight & celiac? I don't need test results to decide what to do for me, but for my family & daughter it could be helpful. But, any dr looks at me & says there is no way you can have celiac. KWIM? Thanks again for all the help! Karen
  9. I'm so new to all this & have read tons of posts & am still not sure what I'm looking at here. Entereloab tests for the gluten gene - right? Do they test for antibodies? The blood tests look for anti-bodies. But, if you haven't been back on gluten long enough then you might not get a + because you won't have anti-bodies. Is this correct? Does everyone with the gene actually have symptoms/the disease? Thanks again,
  10. It is now, but we lived with well water when the bulk of her permanent teeth came in. So, it seems to be something with her. thanks
  11. She's been back on gluten for a year now... her allergist pulled her off rice & corn because he thought she was allergic to them (from a patch test) so she's only been consuming wheat. Almost immediately she started having headaches, more gas & hives everytime she takes a shower. Would this be enough time to get postivie results from Enterolab? I'd like a postive result just so she knows & doesn't want to cheat. KWIM? Thanks again!
  12. My 12 yo daughter has struggled with horrible anemia for the past 1 1/2 years. When it first started the hematologist swore that it wasn't iron deficiency. She was so skinny, gassy, tired, etc. that I investigated things & pulled her off gluten. Immediately, the gassiness subsided, but her anemia didn't improve. After 2 months, the hematologist realized that she had iron deficiency & she was put on iron (it took about a year on iron to get her results normalized). We were then sent to a gastroenterologist. Her dr did an upper & lower endoscopy after 5 weeks back on gluten. Her test results all came back normal - biopsies & all. So, she's been eating gluten ever since. Then after a few months her iron levels dropped again (while taking iron) so she had a camera endoscopy - it showed an abnormal section of her small intestine. But, it could never be replicated on CT scan so she's been on iron. She finally stabilized so now she's being watched for 3 months w/o supplementation to make sure she doesn't bottom out again. All that to say, I'm not convinced that she couldn't have celiac. Her permanent teeth have all come in much darker than her baby teeth for example. (a weird sypmtom I've seen associated with celiac) & she's back to having horrible gas again. She has grown & gained weight finally (over the past year), but she's still super skinny (actually she's lost weight since last July). Could the biopsy be wrong? She was only on gluten for 5 weeks when we did the biopsy? I'd love any thoughts. Her gastroenterologist has never done the blood tests because her biopsy came back negative. Curious what you all think. Thanks!
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