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researchmomma last won the day on February 14 2012

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  1. I really don't understand the reluctance by physicians to diagnose Celiac. I couldn't even get a biopsy for my daughter who has had almost 13 years of symptoms.

    Maybe you could give this article to your doctor by Dr. Fasano. Here is an excerpt about testing:

    AR: What about eliminating the need for the biopsy to diagnose celiac disease?

    AF: Confining the diagnosis to a rigid set of rules, which, by the

    way, I contributed to wrongly, does not reflect the real gluten world out

    there. We know there are clinical cases of celiac disease in which not all

    the criteria are there. We published a paper that said let

  2. Actually, I was the one who suggested she ask for a different doctor in the practice because he is MY doctor and he is the best and not one of the "old guard". I am not so sure he would just back him up as you suggest. He is more enlightened than most.

    If she waits to see another doctor in this area, she'll be waiting about 2 months AND remaining on gluten should they want to biopsy her.

    This is why I am hoping they will relent and let her see my guy so he can review her test results and make a decision how to proceed.

    Aha! That is great and I hope she gets him. I am envious!

  3. My son is not diagnosed but I had to comment because I was told this also. The GI doc told me the reason my son was small and had chronic diarrhea was "his diet is too healthy." He went on to advise that I should feed him McDonald's every day for a month, because that would both bind him up and make him grow. We have a new GI doctor now. My son is almost 6 and weighs about 36 lbs.

    OMG! He should be reported for malpractice, tied to a chair and force fed McDs while watching "Super Size Me". UnREAL.

  4. Before discovering my son was celiac i was told he was small due to a "too healthy diet", which is rubbish because he eats all sorts of foods. He has been gluten free for a year and is smaller than my 4 year old even though he is also 6. I have tried a high fat diet, but found it is really easy to get into bad eating habits. I found myself giving him extra serves of ice-cream etc. Its hard because a lot of foods that are high in fat are also high in sugar and salt. I have toned it down now and i just don't think this is healthy for a young child no matter how small they are. My current doctor suggested to put a slice of butter on top of every meal which works because you are raising the calories without increasing the junk.

    We were told to add butter to my DDs baby food. I did that for one year and it did help. Now she is almost 13 and addicted to butter and in the 3% for height and weight. :unsure:

    However, we have just figured out her gluten issues so I am hoping for an improvement over the next year.

  5. I just called to switch doctors cause I'm sick of getting the run around and they told me they have to put a request in with both doctors. They ask me why and I said I need a second opinion. This is just not acceptable. I'm paying for health insurance and 50$ an appointment, I should be able to see who I want to. I have a feeling I'm gonna get a call with a big fat no as the answer for this. I can't wait :(

    This is the same thing I have run into. But let me tell you this....even if you change docs within the same group it won't help. They back each other up. My pediatric GI won't let me change docs within the group and it wouldn't matter if I did because she would tell them her opinion and they would back her.

    It stinks. I really don't get the medical community's reluctance to test and understand Celiac. I would LOVE it if we could run a national study where we asked Docs to test all of their patients with multisystem complaints...the ones they consider whiners and hypochondriacs. I bet a lot of them would have Celiac. Then if they don't test positive, recommend a gluten free diet for 6 months to catch NCGI....hmmm...how I wish.

  6. You can definitely go gluten free without testing but if you want to know if you are Celiac you need the testing. Is there any State or Federal programs that you would qualify for? Probably not, but thought I should ask.

    I am no expert on skin care products but someone posted here that gluten is a large molecule and doesn't cross the skin barrier. Honestly, I would wait for awhile to worry about that. Start eliminating the WADS of gluten that you are ingesting. I will let others comment on that.

    Do you have a Trader Joe's near you? Their rice pasta is pretty darn good and dang cheap. I have one indulgence....I cook trader joe's spiral rice pasta (they have a huge list of gluten free products including cosmetics) and I use the Kraft Mac and Cheese packet which is gluten free. I cook the pasta, set it aside, then mix the cheese packet with the butter and milk until smooth and then I toss the pasta in. Cheap and good. If you like canned chicken or tuna you can toss that in. My daughter is so happy I can make that for her.

    I am sure if you start feeling better, you boyfriend will be on board. My husband thought "wow, so much work" until he witnessed how much her health improved.

  7. My pediatrician told me something once that I keep in mind to this day: if her food equals one good solid meal per day, you are doing great. Keep the fluids up and include some healthy snacks and that is the best you can do. If a child feels your stress about it, they will react to it.

    I had to just put the food down and stop nagging. It seems to work. However, I know how stressful it is and there is some great advice on this thread.

    Google ideas for food for toddlers or 4 year olds. I bet a bunch of it is gluten free naturally.

    I hope it gets better soon.

  8. Great question! I am gluten-free with my daughter who is gluten intolerant (both sides of our family are).

    I decided to do it with her so I could feel the peer pressure (you wouldn't believe how many of my friends will say "she won't know if you eat it" :rolleyes: ), has an ally and I am interested in finding good tasting food for us both.

    That gas and bloating you have may just go away. ;)

    What I have found with going gluten free is that I feel better and part of that is because I don't eat things with a label full of random ingredients. Like ice cream for example: cream, sugar, vanilla....done. What is all that other crap?

    My daughter and I cook together which is nice. When we go to a restaurant, we figure out what we are going to get that is gluten-free together. Much better than her being different and alone. She loves that I support her in this and my husband supports it too ( I was a little surprised at this but my daughter gets really sick from gluten and he doesn't want to see that side of her).

  9. I am with Skylark. I had to do the exact same thing for a business trip the weekend after we went gluten free.

    I have made a cupboard gluten free and all snacks and supplies are in there. I also have two gluten-free shelves in the freezer with stuff for smoothies, Udi's pizza crust, etc.

    I then made a list of what goes in the lunch box. Then I made another list of gluten free foods for breakfast and lunches over the weekend. Then I planned the dinners and shopped for them. My husband will cook if I either give him an easy recipe or make it a grilled food. My kids love BBQd chicken (gluten-free bbq sauce of course).

    My husband texted me during my trip and said he was so appreciative of the lists and prep. I think he was pretty proud of himself too. :D

    Make sure you have food planned for when the grandparents watch him.

    Snyder's makes the most amazing gluten free pretzels, BTW. My daughter's friends are asking their mom's to buy them. :P

    Go, be free and enjoy the weekend.

  10. Welcome to the Board. My daughter is non-celiac gluten intolerant. We are seeing that she has malabsorption issues much like Celiac because she has high fecal fat (but we are hoping to rule out some other diseases like Crohn's Dissease too). However, we know she is very sensitive to gluten. So I feel the big difference between gluten intolerance and Celiac is the intestinal villous blunting which is diagnosed by biopsy.

    I replied to answer your question about testing. Yes, you have to be eating gluten for them to work. Since you have only been gluten-free for one week, you could start eating it again and get the blood test in a week or two I suppose (someone more medically savvy will reply).

    The cost of the blood work is about 200 dollars. We did ours without a doctor through www.ineedlabs.com. However, there is a 30% (at least) false negative. But if you really want to get the blood work done (I did) before you go completely gluten free, do it now because after you are gluten-free for a period of time, it is very hard to go back. My daughter was accidentally glutened after being gluten-free for 3 weeks and she got very sick (all the old symptoms came back with a vengeance). If her doctor asked her to eat gluten again, I am not sure we could do it. Her anxiety, moodiness and gut reactions are not worth eating eat.

    If you decide to do the labs from ineedlabs.com, you will want the Comprehensive Celiac Panel, not the HLA gene test if you are trying to save money.

    It sure sounds like you have Celiac with that Reynaud's diagnosis. Eating gluten free can be overwhelming in the beginning but this board is a fabulous resource so ask away. My daughter is only frustrated by gluten free if her friends are hanging and eating pizza or some other easy to grab food that she can't have. However, I then remind her that she didn't like pizza because it made her stomach hurt, etc. We laugh then. It is more about being told you can't have something than it is about eating gluten free. Hope that makes sense.

    Welcome to the road of better health.

  11. I see gluten intolerance everywhere. Whether Celiac or not. That is the frustrating thing for me. My doc won't even consider a Celiac diagnosis without the genes despite all the major symptoms and medical proof that some just don't have those two little genes. We don't need a Celiac diagnosis! No big deal, it would have been so refreshing if the GI recommend a gluten free diet for someone with all the symptoms but no genes!!!! Just to see if it works. Right, most GIs don't believe in gluten intolerance.

    I see IGNORANCE everywhere.

    If it weren't for this board/forum, my daughter would be a huge gluteny mess.

    I am shocked that people think I am crazy for making such a big change to our lives by removing gluten. Really? I think they haven't had a child sick since the day she was born with every individual diagnosis you can think of.

    I can't wait to educate our neurologist! Maybe he will start seeing Celiac or Gluten Intolerance wherever he looks!

    Love this thread because I want to shout: just try it, you may notice symptoms disappearing.

    BTW, we put our dog on a gluten free diet because I didn't want gluten dog food in our house. All his "hot spots" are disappearing. I love it!

  12. Good girl indeed! okay, this is sooo weird, but when I was very, very ill back in 2009, all I wanted was Twizzlers and Sun Chips. I ate that crap by the bag full and I was sick every minute. I had NO idea that licorice contained gluten before all this. I was actually craving it. I could not eat anything or keep it in, but I wanted Twizzlers. Dumb. Hubs thought me insane but appeased me because it was all I asked for.

    I was thinking about this very thing after your J. was Glutened by the cc from snacks and at the party last week and wondered if you knew about Twizzlers. I made a note to tell you about it when I was PMing you because believe it or not, I woke up this AM thinking--tell K about the Twizzlers---and here you are telling me!! :lol:

    okay, I sounded a bit crazy there. :lol:

    Anyway, give her big kuddos for knowing to say NO!! all right, J!!

    Isn't strange what we crave? Jordan was sick from CC and craved rice krispie treats. She ate a ton of them on Sunday and missed school on Monday with all the old symptoms. Funny.

    I learned about twizzlers and licorice from my neighbor. They poisoned their son twice with twizzlers and licorice. So that one is stuck in my head.

    However, I will take any tips you can think of! Thanks for thinking of me!

  13. I wouldn't bank on that TTG IgA being correct, and your doc may tell you this as well. Even the most careful labs sometimes make mistakes. That's why lab slips will come back with a "repeat tested" note sometimes on out-of-range labs and why a doctor's usual response to an inconsistent lab is usually to either disregard it or repeat the test. Unfortunately Enterolab didn't know about the low IgA when they ran the sample so they probably didn't check it again to verify the result.

    I will be curious to hear what your doctor says about the fecal fat.

    After I sent the sample in, i called to tell them about the IgA total serum being low. However, I don't think the GI will care either way!

    It probably doesn't matter anyway, it is the fecal fat that I want addressed, right?

  14. Gluten can cause acid reflux in gluten-sensitive folks. More evidence for gluten intolerance. Pancreatic insufficiency is common in folks with gluten intolerance/celiac.

    There is an association between fecal fat and reflux but it's not what you might think. Low stomach acid can cause reflux, poor production of bile and pancreatic enzymes, and malabsorption. You mention pancreatic insufficiency - stomach acid stimulates the production of pancreatic enzymes so in a low acid situation the pancreas doesn't work well. In that case a PPI is exactly the wrong thing to give. All the inflammatory bowel diseases including celiac, gluten intolerance, UC, and Crohn's can cause fat malabsorption too.

    Besides, Prilosec increases the risk of fractures in older folks and your daughter is already having fractures. That alone is justification to refuse the prescription.


    I'm not sure I think much of your GI. Fortunately the reflux is moot since it's gone away gluten-free.

    Now this is interesting. I think I am going to approach the GI with the fecal fat lab and just ask her what she thinks could cause it. It truly needs to be looked into. That is so interesting about the low stomach acid. Irish did mention that too. It is also interesting to me that she has tTg IgA even though she has low serum IgA. I may ask the doc about that too. Just to get her medical opinion. I am quite certain she won't care about the genes but we will see. I am going to go in and give her the benefit of the doubt and see how she responds.

    IrishHeart: thanks again! At school today they offered the kids red vines to celebrate the last day of school. Jordan is just coming off getting glutened and she knew better than to eat it if she didn't know for sure (of course it is loaded with gluten). Good girl!

  15. Malabsorption occurs in other conditions besides Celiac, but J has done well off gluten and reacts pretty violently when glutened --as you have reported.

    It arises from other conditions, among them:

    Whipple's Disease

    Tropical sprue

    Crohn's disease

    Short gut syndrome


    Eosinophilic gastroenteritis

    Gut surgeries



    THIS is a legitimate question for your doctor, too bad if she does not like it.

    Resolution of acid reflux OFF gluten (and we can almost all relate to that one!) proves your point. Many of us took those drugs for years only to discover we had LOW stomach acid. :rolleyes:

    Perhaps your primary care doc can run lab tests for you?

    Those all sound horrible! I am hoping just for gluten intolerance, lol.

    We have an appt with the GI in two weeks so I think that should work. Hopefully she will be puzzled by this as well.

    She hasn't had her stomach acid tested. The GI said, that the high dose priolosec would tell her if that was the issue. So she wanted to dose her full of prilosec for 3 months to see if that worked instead of testing her. ARGH.

    I think they need to rule out pancreatitis or some other pancreatic issue.

  16. With her current results you cannot rule out Crohn's or ulcerative colitis. Yes, malabsorption is possibly with non-celiac gluten sensitivity.

    Total IgG isn't usually tested. Low IgA is a risk factor for celiac. Is the only IgG test she got TTG? I would be nice if your daughter had gotten an endoscopy but she's gluten-free now so it wouldn't be reliable.

    You might push harder to exclude diagnoses other than gluten intolerance in a few months if she doesn't keep responding to the gluten-free diet. Right now it sounds like you're on the right track. If your daughter had a LOT of symptoms of Crohn's or ulcerative colitis one would hope her GI would have picked it up. Obviously high-dose prilosec is not where you want to go. :blink: Has her GI even tested to see if she has too much stomach acid?

    If your GI isn't willing to do vitamin tests based on the fecal fat evidence of malabsorption and the fractures, her primary care doctor might.

    She had the Deamidated Gliadin Abs, IgG and tTg IgG which were both negative.

    I have run clinical studies in UC and Crohn's and she doesn't seem to have those symptoms but I will ask the GI if they can be ruled out.

    Hopefully she will run the labs that I ask for.

    One last question, as I stated her GI wanted her on priolosec 40mg QD. I didn't do it and she is going to be mad. Fecal fat has nothing to do with potential acid reflux right? I can find no link online. Just a note that my daughter has no symptoms of reflux when gluten-free. NONE

  17. Legally, your doctor cannot diagnose with a test that has not been validated. It opens him to enormous malpractice issues. Besides, fecal anti-gliadin IgA alone doesn't predict diddlysquat. I keep trying to get people to look at the slides posted on the Enterolab website but nobody listens.

    Fecal TTG is a more useful test but remember that Dr. Fine developed fecal TTG as a test for microscopic colitis, and that it can also appear in Crohn's as well as celiac. Fecal fat is similarly a similarly nonspecific measure of malabsorption. Without any positive results on specific tests for celiac and without celiac risk genes, your doctor can not assume gluten intolerance is the issue. To further cloud the water, some people with inflammatory bowel diseases improve off gluten. Other issues need to be ruled out first.

    The TTG result is certainly interesting but what your daughter needs is an IgG celiac panel and an endoscopy. Did she not get proper testing before she went off gluten?

    Good info. Our GI went about things backward. She gene tested her first (low total IgA) and since she is not DQ 2 or DQ 8 (3) positive, she would not do the endoscopy. She also had a negative IgG tTg, but I don't know what her total IgG was.

    She is improving on gluten free diet but the GI told me that since she doesn't have the genes, that she didn't need to be gluten free. I should put her on high dose prilosec instead.

    All I really want is some blood work for malabsorption of the basics like folate, B12, etc. I would also like a bone density test since she has broken her wrist 3 X already while doing things that were fairly benign.

    Skylark, I am assuming you can have malabsorption and inflammation in the gut due to gluten intolerance (non-celiac), correct? Or should I be pushing to see if she has something like Crohn's Disease or Ulcerative Colitis?