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researchmomma last won the day on February 14 2012

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  1. This is very interesting!

    You sound like me--starting to look at all your symptoms, collecting data and seeing how all the pieces of the puzzle start to come together. I was a mystery wrapped in an enigma for sooooo long and now, it ALL makes sense. From the gall bladder disease to the insomnia to the reproductive problems to the 90lb. loss to the chronic horrible pain I developed. It's mind-blowing. :o sometimes.

    BTW, with an aunt with celiac, your daughter now has a VALID REASON for being biopsied. Tell your doctor and do not take no for an answer. ;)

    Just remember, sometimes kids do not have ENOUGH villi damage YET.

    This is the frustrating part of "testing" for celiac.

    You and your husband could also have genetic testing done. Do you have other children? Do them, too. I had mine done through Enterolab and then, for whatever reason, my new GI had me do it again through stool while he checked or other Inflammatory diseases like Crohn's. (just covering his bases, I guess? It was the same result, of course.) Crohn's is in my family as are many other autoimmune diseases. Big CLUES there.

    Again, regardless of the genetic markers and test results, gluten may still be the culprit. I think you already know it is. I know you are filled with nervous energy right now...but try to relax. Whatever the result, you have made your decision. :)

    Take care. Hang in there!

    Hey, is your printer still on ? :)

    Bring this to the doctor who said your daughter's symtpoms were not celiac symptoms....especially read the section under CHILDHOOD...epilepsy, malaise, anxiety, etc....sounding familiar?? This article is from 1998--but even so, the symptoms were RIGHT THERE!!Imagine if just one of them read a medical journal from this century once and while?? <_<


    Great article! Especially in regard to epilepsy.

    So my SIL sent me her paperwork. Her Celiac Panel was not positive. her AGA IgA was 1.41 and less than 1.99 is considered normal. However, the doc said it was slightly positive (maybe compared to what she has seen in her practice) and her IgE was higher than normal suggestive of Chronic Fatigue. She told she saw a genetic component to the gluten intolerance (the AGA IgA I guess) and along with the IgE recommended a gluten free diet. So that put a crimp in my sails.

    But either way, Celiac or Gluten Intolerance, I think my daughter needs a gluten free diet.

    One more day of waiting, hopefully!

  2. Well, Momma...seems like you've got a gluten issue yourself, hon.

    You're very welcome. Wish I could do more.

    Please do not hesitate to ask for help. I'll do my best or point you to the one who will know the answer. These people are the most generous, knowledgeable and supportive bunch I know. ;)

    Hang in there!!

    I have suspected gluten in myself for a long time. Soooooo guess what? My sister did this genotyping thing for her entire family and the results are online. They do the HLA DQ typing and even go to alpha and beta level. She had markers for Celiac (meaning they are consider new theories on Celiac Disease). Here is the info from the online results:

    q28 near LPPMarker:rs9851967

    This SNP is located near a gene called LPP, which encodes a protein involved in cell adhesion and is expressed in very high amounts in the small intestine. However, very little is known about its potential role in the development of celiac disease.

    Multiple studies have identified this SNP to be associated with celiac disease in populations with European ancestry. This SNP has not been studied in populations with Asian or African ancestry.

    However, her husband is positive for the gene for Celiac. So coupled with this gene and the marker, their son is high risk for Celiac. I am not sure what the marker means but if I have it and my husband passed his gene (sister positive), she may be gene positive too.

    Yes, I am making myself crazy!

    lol, thanks for listening. I think things will become clearer over the next few days as I get my SILs results and get Jordan's, hopefully tomorrow.


  3. Ladies,

    A few more thoughts.

    The "backed up poop"? That's from chronic constipation. (been there/done that :rolleyes: ) That alone causes toxicity in a body and creates irritability. Get them on some probiotics (like Culturelle) and have them drink LOTS OF WATER. No sugary sodas for a week. Skip cheese and ice cream. These foods can cause constipation. The water will hydrate them and get things moving. ;) It's crazy how much we all know about poop and bowel movements on here, :lol: but the truth is, I know what works because I learned all I could about why my entire GI tract was burning and malfunctioning for so long.

    The standard thinking has always been that diarrhea is a celiac symptom, but CURRENT information says both D and C can occur. Not everyone is thin and wasted away either. There are no more "typical symptoms" it seems. Or there are no symptoms at all. This is why it is so difficult to get a DX.

    Delayed menarche and early menopause, fertility issues, miscarriages--all of these are related to gluten intolerance and/or celiac (and various other disorders) Celiac does not cause everything, of course, but it may explain some things.


    I had multiple miscarriages, failed fertility treatments and work-ups done for 6 years and never did carry to term. They know NOW to check for Celiac, but back in the 90's, sadly, they did not. If I knew THEN what I know now, and had been DXed earlier in my life, I may have been able to have children.

    These are just some of the many symptoms I had and never knew it was because of celiac. I am not the only one. Once I was DXed and my Mom started reading the materials I sent her, she told me she did not start menses until she was nearly 17. She also had an early menopause. She said she had stomach trouble as a kid and leg pains. Her mom told her they were "growing pains". I said "Ma, that's the same thing you told me!" :rolleyes:

    She feels bad I have this disease, thinking she and my Dad both "gave me the genes" and did not realize my illnesses and various problems were related to this, but really, HOW COULD ANYONE know? If the medical community at large does not truly understand this disease, how can the rest of us?? The leading doctor/researcher is from Italy--Dr. Alessio Fasano-- and he wondered "where are all the American Celiacs?" because it is so under-diagnosed in this country.


    It was only through research that I learned so much and put ALL of my health history together that I was able to figure it out. Dozens of doctors--and alternative practitioners, too--missed it. I was very angry about that, the years I lost crippled with pain in a gluten-headed fog, the THOUSANDS of dollars we spent searching for answers and mourning the fact that I never had children because of this thing. I could be angry and resentful for the rest of my life or I can get well and help others with the same health issues. I even wrote to the many doctors I saw and told THEM what I have and that they missed the boat. I make it my mission to educate others about gluten. It's poison. And I "see celiacs" everywhere I go. I have two more people in my life feeling so much better off gluten and I am glad I was such a "pest". :lol: I feel like "a celiac whisperer"...

    This is what you can do. Once your daughter is on the road, you and she can pay it forward. 97% of celiacs do not know they have it. People have "IBS" and "GERD" or anxiety and depression and they do not realize it could just be what they are EATING causing all that misery.

    Do NOT blame yourself for not seeing it sooner. Be kind to yourself. There is absolutely no way for you to have known. You know NOW and you are doing everything in your power to get her started on healing and having a long and happy life. :)

    That's why I said she is a lucky girl-- because she is. :)

    Irish, you are like a God send to me. Thank you! I am so sorry about the miscarriages and infertility. That is horrible. There really are no appropriate words. it makes me wonder about all the unexplained infertility. I had five miscarriages and secondary infertility. I can only imagine a small part of your grief.

    Thank you again for all of your help! Hopefully tomorrow we get some answers. Either way...GFD is in our future.

  4. Your daughter sounds a lot like mine minus the siezures. She was always getting "sick" and the school starting saying "maybe it's nerves." When I knew it wasn't. She had her appendix out at 11 and that's what I'm curious about. What did the scan show about your dr's appendix? My daughter had a dull ache on her side for a week...kept being sent home from the doctors' office. Then one day she woke up and was nauseas so I went straight to the ER...she had vomiting and D and her blood count was elevated at that point. CT scan showed fluid around her appendix and they said she needed it out...though the surgeon told me after they removed it that it wasn't all that imflamed but the lymphositic fluid surrounding her appendix was often present in people who have celiac disease. We did the celiac panel back then and it was negative...though I was never told her IgA antigliadin was elevated. Now at 18 we are back to testing again...blood was negative but she's having an endoscopy in a couple weeks as she's just not feeling well...and we know it's gluten related. Oh and how old is your daughter again? 12 or 13 and they are considering her to have delayed menses? My daughter was almost 16 by the time she started her period...definitely later than most.

    Anyway, I'm really curious about the appendix thing. Currently my 17 yr old is being watched for appendicitis....she is presenting with the same exact symptoms as my other daughter had when she was 11...same kind of pain...and I'm told as I was back then that "she just is full of lots of poop...and that's causing her constant pain." Um...no I don't think so...LOL

    Wow, sounds familiar. The appendix CT scan showed swollen lymph nodes and fluid behind her appendix. They were able to pinpoint that. Her blood work work was normal and she was afebrile. Funny, we got the "lots of poop" thing too. They said they could see it backed up.

    My 12 year old is not really consider late for her menses but late in blooming. She is a good 6-12 inches shorter than all her peers (3rd percentile for height) and she is teeny tiny as far as weight. She looks like a 4th grader.

    As you probably read our blood panel for celiac was negative but her serum IgA was low so it really isn't valid. We are being gene tested and then if positive hopefully a biopsy.

    Both your daughters sound wheat intolerant or celiac but I am brand spanking new here! Others may be able to advise better than I. I would ask to have both girls blood panel redone. Do you have celiac in your family?

    Let's keep tabs on each other. We should get our celiac gene results this Friday.


  5. Sounds like you have a good plan, hun! Some folks on here will say just go gluten-free and forget the test and some will say wait and see what the results say. I usually say "go with your gut instinct" (pun intended ;) ) because you know best.

    Awfully glad your hubs is on board, too. Makes your work easier.

    As for you, Mom? She is one lucky kiddo to have you fighting for her! :)

    ok, you have some reading to do...LOL....keep me posted and if I can help further, I will certainly try.

    Oh you make me cry. I am blaming myself for all the years I thought she was a hypochondriac with so many aches and pains. Always asking myself why she couldn't be happy and normal. Ugh. Funny, my Celiac neighbor kept telling me she should be tested. I am anxious to move on and get her healthy.

  6. HOLD ON!

    If you want a "REAL" diagnosis from biopsy??--she needs to be CONSUMING GLUTEN!!!! Once you take gluten out of the diet, you start the healing process of the villi and the antibodies start to go down and the biopsy results could be affected, rendering a false negative.

    Wait to see if the doc will do it. Then, there will be no worrying "if you should have done it" or not? Unless of course, you do not want to put her through it.

    It's your call, Mom and Dad.

    Even if the biopsy is NEG, you should still go gluten-free and see how she does. That's my two cents :)

    In the meantime, get her started on probiotics. IMHO

    Yes, we are definitely waiting to see if she is gene positive. If she is, I can get her biopsied soon and then go gluten-free. So I am just poisoning her daily with gluten until I get that result (and maybe a biopsy). I would like the diagnosis if there is one. However, just like you said, if she is gene negative, she is going gluten free anyway. Both my husband and I are on board with GFD for at least 3 months to see what positive changes it will bring.


  7. I am a crying mess right now. Thank you for your kindness and all of the information. I heard about Dana Korn's book through my friend. Anyway, my printer is going crazy and I am creating a binder.

    I really think gluten is her nemesis and I can't wait to get her started on a gluten free diet. I am pretty upset at how many symptoms my doctor didn't even ask about before she made the "she doesn't have celiac" decision. Well at least she granted the gene test.

    Thanks for fixing all my silly newbie mistakes on this thread.

    off to read through my tears. I want her well.

    Thank you!

  8. Oh, that's nothing....here, check this out:


    That was super helpful. I forwarded to my husband and mother. I am so on board. Gluten free diet is in her future. Very soon.

    Oh and I may be confused on the lymphocytic enteritis. It was something similar to that. What they saw was swollen lymph nodes near her appendicitis which explained the pain she was having.

  9. Gene tests were used as exclusionary tools before. Now, we know other genes are associated with celiac. People on here are living proof! So the tests are questionable anyway. More research needs to be done.

    Celiac can "trigger" any time in life. If someone is "neg" on biopsy or blood work in 2011, they may be "POS" in 2013 or 2016....

    Consuming gluten is what determines this--but by then, how many OTHER health problems have developed? You simply cannot fathom what I have been through--as have so many others on this site--because of LONG unDXed gluten intolerance.

    As for the Celiac vs. NCGI controversy about malabsorption/villi damage, there are loads of people who are NOT Dxed as celiacs and they have had extra-intestinal symptoms nonetheless. This is where the concept of a leaky gut comes into play. These people were deathly ill, had eczema, psoriasis, brain fog, anxiety, vitamin deficiencies and various other complications. Coincidence? Hardly.

    Leading celiac researchers, like Dr. Fasano have already proven gluten sensitivity causes many symptoms in the body--just like celiac does.

    If you want the menu/shopping list --and lists of safe/unsafe ingredients-- I can post it here or in a personal message. Let me know.

    waffles? My husband liked the Van's frozen waffles, but since I cannot have soy flour, I did not taste them. I did have some at a gluten-free cafe though and they were AWESOME!! Recipes abound on the internet.

    This change in lifestyle is not that difficult once you learn the ropes.

    I do not trust doctors anymore. Well, maybe one--my new celiac-savvy GI. :)

    They kept me ill for most of my life because the protocol for diagnosing celiac is just plain wrong. I knew in my heart what it was and I was RIGHT! I went from 3 years of starving, weak, in agonizing pain, out- of- my head with gluten stupor and feeling like death would be easier---to getting my life back!!!. I have gained some weight and my arms and legs work again. I sleep more than the 2 hours a night I got for over a year. I am not living under a cloud if inexplicable anxiety anymore. Dozens of symptoms slowly, gradually disappearing, though I have plenty more to go. I even had to push for proper follow up testing!! WE have to be our own best advocates!! The AMA just does NOT GET IT!! Sorry for the rant, but I am really upset about your kiddo and I wish someone had told me what this was when I was 12. My life would have been so different. One simple food protein. geesh! <_<

    I am better now. Why? No medications, no magic bullet....just this: NO GLUTEN!! :)

    That is really interesting about the leaky gut thing. When my DD went in for suspected appendicitis they dxd her with LYMPHOCYTIC ENTERITIS. They could see it on the CT scan. Isn't that associated with leaky gut? I believe it is also associated with Celiacs but I need to do some more searches on that.

    We would love to get her off epilepsy meds since her EEGs are normal but she has seizures every year or so. I think they are gluten related since they are occipital which the GI confirmed is related to Celiac disease.

    I want to thank all of you again for your support and sharing your stories with me. But most of all for your concern.

    I would LOVE ANY ADVICE and RECIPES on gluten free cooking or products. We will be starting her gluten free regardless of her dxd or lack thereof.

    Thank you once again!

  10. No, I HAVE a DOUBLE HQ2 gene, actually. The story I told you --that was about another one of my doc's patients.

    I was blood test NEGATIVE. Told it was okay to eat gluten. Went downhill for another year. <_<

    I got a gene from both parents. We know NOW this is what killed my Dad. My 84- year- old Mom went gluten-free a few months after I did and feels GREAT! Her GERD, "IBS", insomnia, high blood pressure?...gone. I will take longer because I have Celiac and multiple deficiencies and complications. She may be NCGI (non-celiac gluten intolerant).

    Regardless, the TREATMENT is still the same. No GLUTEN.

    If your daughter stops feeling like hell every damn day, she be less likely to cheat. She will see that eliminating this food protein stops all her pain and moodiness and anxiety and eczema, etc.

    Listen, no matter what your daughter's DX is...family members will take that knowledge and use it or disregard it. All of us can tell you how our family members turned a deaf ear to our pleading to be tested. NOT ONE of my family has been tested and THEY ALL HAVE GASTRO issues, autoimmune diseases, like diabetes, MS, Crohn's arthritis, thyroid disease and various depressive issues. No one will do this diet unless they feel as crappy as we did.

    Do not concern yourself with all that right now. Get your daughter straightened out first.

    Yes, you are right about the family members. I have seen even diagnosed Celiacs be in denial about what it can do to your body to ingest gluten contaminated foods.

    AHHHH, ok you are double gene positive. As I said my fear is that she is gene negative or DQ 9 which Europe and Middle East considers Celiac but the US doesn't and then she will not grant the biopsy. Many articles stated that if you are gene negative, there is a certainty of 99.9% that you are NOT Celiac. I just don't by it. I wonder if many of the NCGI or NCGS are really Celiacs that are undiagnosed because medicine hasn't figured out that there are other gene combinations that cause Celiac. I have to say that any doctor worth their salt should realize that because there isn't just one gene for Celiac even now. I run clinical trials for a living and I will bet you money that in 10-20 years they will find a few more genes that can trigger Celiac.

    I know that my daughter has some issue with gluten. I FEEL it and see it in her symptoms. So regardless, she will be gluten free as soon as possible. I have already been educating my mother and have been looking for some alternatives for her favorite gluten foods (like Frozen Waffles: if anyone has a good brand, please let me know).

    I watch her eat gluten now and cringe because I feel like I am poisoning my daughter all in hopes for a positive gene and a blood test. I won't gluten challenge her if she is gluten free and doing better so this is IT for me. It needs to happen now if we want a diagnosis. Do you know what I mean? I read about those challenges and I feel these mother's pain of poisoning their kids after months of feeling better. I don't think my daughter will want it either.

    Thanks again for the support. I feel like we should take bets on her being gene positive or not. The lab told me they would have results to the doctor in 3 days which is today. The nurse from the office said it takes a week which would be Friday. In the meant time, I try not to obsess which is virtually impossible.

  11. You've gotten some great replies so far, I just wanted to throw this in. Stunted growth, low bone-density as well as other issues would tie in with celiac due to malabsorbtion of nutrients. In other words, because of the damage the gluten does to the digestive tract (intestines, etc.) one doesn't absorb some or most of the nutrients from the food. Technically I guess it's the body's reaction to the gluten antibodies that are created when one eats gluten-y foods that cause the damage... but the end result is nutritional problems which lead to other seemingly unrelated issues.

    Ciamarie, as I sit here, impatiently waiting for our gene test which if positive my doc is "willing" to do a biopsy in February (over my DEAD body will I wait until February), I am still trying to figure out my odds of Celiac vs. Intolerance for my daughter. From what I have read it would seem that gluten intolerance doesn't effect the gut but it does effect the gut of a person with celiac disease. This leads me to believe that with all of her issues she has celiac disease. Especially the low growth hormone, anxiety, excema, pale skin and dark circles, bone pain, broken bones, and the list goes on. I wonder if gluten intolerance could do all these things???

    Even if she is gene negative, she will be on a gluten free diet for 3 months to see if it brings on puberty, growth and reversal of some of these issues. We will be keeping a food and symptom journal as well. My daughter is very excited about going gluten free because she HATES taking drugs and wants to be normal. She is miserable at every meal. Hungry but feels sick after a few bites. But starving so she begins to melt down. Our best meals are whole food meals: meat, veggie and a non-gluten starch. Funny eh?

  12. If her results come back positive, she definitely should have a bone density test. If you are told she is too young, age has absolutely nothing to do with it. She needs her Vit. D, B12, folate, potassium, magnesium and calcium checked too :rolleyes:

    Yes, I will ask for that. Does gluten intolerance cause stunted growth, etc? I mean if she isn't Celiac do I just have faith that gluten intolerance causes the same issues like excema, low IgF-1, etc?

  13. Hello, I run clinical trials and thought I would do a quick search to see what was going on in the celiac indication. I thought this trial was interesting. It is for those that are gluten free but not formally diagnosed (maybe self diagnosed). Check it out: http://www.clinicaltrials.gov/ct2/show/NCT01100099?term=celiac&rank=15

    There was also a trial for those dxd celiacs that are still GI symptomatic with a gluten free diet. Let me know if you are interested in that one.


  14. I do have to ask, How did this woman ever gain the reputation of a celiac expert? If she still looks at symptoms one at a time, and has the old stereotypical images of celiacs and cannot think outside the box that appears to be her brain? :blink:

    Yes, even my girlfriend who referred me to her (she and her son are Celiac) was shocked that she didn't tie in the IgF-1 growth hormone deficiency and low BUN.

    So strange. My girlfriend's son was negative on the bloodwork as well but positive by biopsy (which was not done for celiac but the pathologist caught it!). He was being checked for ulcers.

    I am hoping to have the results by tomorrow. Then I have to start begging for a biopsy. If she is unresponsive then I will get my pediatrician involved.


  15. One other note IrishHeart, I would LOVE your recipes and shopping list. Also, thank you for sharing how un-dxd Celiac effected you. This is exactly what I am trying to avoid with my daughter. I explained that regardless of the test results we should go gluten-free just to see if she starts growing. I don't want her to be 4 ft 7 inches her entire life. I am tall and so is my husband. It is amazing to read everyone's histories. The suffering and long term effects seem so unnecessary.

  16. @ Maximoo, my daughter is 4 feet 7 and 70 lbs. She has been 70 lbs for over a year. I read your reply to my DD and she just smiled and said "wow, maybe it will be a good thing if I am celiac because I will grow and be like my friends". She is very stressed out about giving up certain food items but i told her that she and I will bake together and learn what the heck we are doing together. I have suffered IBS and constipation all of my life and I have unexplained high blood pressure (I am not overweight and in decent shape). I also had 5 miscarriages and adult onset asthma. Wow, writing all my symptoms is setting off alarm bells, lol. So if she has celiac, I will get tested too but regardless, I will go gluten free with her for at least the first month.

    @ Mushroom, I completely forgot about that low IgA invalidating the test. Thank you for the reminder. Her total IgA was 43 (norm 70-432) so I think that negates the test. I will be speaking with the doctor soon if this gene test is positive.

    @IrishHeart, yes this is the thing that upsets me most. If that doctor had taken the next step and had my SIL biopsied, we would have had the Celiac screen a few years back. I told her that you can't be slightly positive and she said "wow, I really wasn't paying attention". Her doctor recently told her that she can't cheat on the diet that it will cause her illnesses down the road. So to ME it sounds like that doctor knows she has celiac but isn't being honest with her. Or perhaps gluten sensitivity causes the same issues as celiac in regard to illness. I just find the entire things strange. Your history is my biggest fear, gene negative, but really Celiac. I work in clinical research and I fully understand that genotyping for celiac can be different for each individual. I understand that 95% will present a certain way but there will be other "formulations" as well. I would just like it to be simple, pretty please! I think it will be very hard to keep my DD on GFD without a diagnosis. I think she will cheat.

    @Roda, it sonds like both of your boys are Celiac but I am a newbie here, lol. But you have inspired me that regardless of the test results she needs a GFD. Perhaps the family history is a non-celiac gluten sensitivity. We have friends with this and going gluten-free has changed their lives.

    If anyone else has any thoughts, please let me know. I feel like I am feeding my daughter poison while we wait for the gene results. I do want her biopsied so I can convince my husband and other family members with major symptoms to get tested.

  17. First of all thank you all for your replies. I was beginning to think that I am crazy and my daughter a hypochondriac. I am not sure what sure what I will feel if the test for genotyping is negative. I swear we could be one of those people that are gene negative but still have celiac. That is our MO, lol.

    Thank you for feeling my pain and making me feel better. I really needed this support to get through this week.

    I do feel so bad for my DD. She is suffering and she is anxious about this result. She needs to feel validated. Do you know what I mean?

    The interesting thing is that the GI is a Celiac expert. The top in our city. I liked her but she was truly at odds with my daughters issues. They were too numerous and she counted her blood workup as negative. Even my primary pediatrician said that the celiac panel was void due to low IGA. I should have mentioned that.

    Well, hopefully she comes up gene positive. It would be a relief to be honest.

    Thanks All.


  18. Hi, I am brand new here but I have been lurking for about a week. I need some support. I can't stand the waiting anymore and neither can my daughter. 6.5 years ago, at age 6, she had a seizure that was based in the occipital lobe. She had two back to back and then didn't have another for 4 years. However, during that 4 years, she has had countless digestive issues which made her a bit food phobic. She has constipation, nausea, some vomiting (rare), gas, painful cramping and becomes food adverse. Fast forward to the present. She is now very short in stature and her pediatrician became concerned about her lack of growth after an ER visit for suspected appendicitis.

    (During the last two years the seizures became more frequent but still normal EEG between them which is unusual. It stumped her neuro but he put her on meds anyway.)

    We had blood work run via the pediatrician and her Celiac panel came back negative although her IGA was below even normal levels. Her TTG IGA was negative and so was the IGG. I will say that she hadn't eaten in three days due to this bad episode of suspected appendicitis. Maybe that effected the result?

    One result that was alarming is that her IGF-1 (Growth hormone related) was below normal levels for her age. So an appointment was made with a GI and an Endocrinologist (late December).

    The GI stated that because the celiac panel was negative and we had no family history, she doubted celiac. However, I asked her if the seizures could be related since we could never find a cause (she has normal EEGs) and she said only if it is occipital. BINGO. This resulted in her willingness to run a gene test.

    Children's lost her blood so we had to do a recollect. ARGH.

    So while we sit here and wait for the gene results, I called my sister-in-law to find out why she suddenly went gluten-free a year ago. She went to her doc with complaints of tiredness, GERD and IBS. They did a celiac panel and it was "slightly positive". They did no further testing but had her start GFD. How would they know that without a gene test or biopsy? I think her GP just said "raised antibodies" so let's go gluten free. She isn't very stringent with the diet because they told her that she wasn't positive for celiacs but she had a gluten sensitivity. So she doesn't ask about sauces when she goes out to eat but avoids bread and pastas. Even with this her GERD has been much better but not resolved and her IBS has mostly resolved. If she eats a bit of bread she is nauseated for several days.

    Anyway, we had a long discussion and we now are wondering if she has Celiac AND if their father had it. The entire family is plagued with GERD and IBS. Her father died of esophogeal (sp) cancer and had severe GERD. I wonder if my husband also has it but he is in severe denial right now and maybe he is right. If my daughter comes back gene negative, I will need to figure out what is going on.

    I was told that the gene results will take one week and the GI was so convinced that my daughter has GERD and not Celiac that she scheduled our next appt for February and said we could discuss the gene results then. Are you kidding me???? My daughter is in daily pain and I want answers now, not in 2.5 months. She gave her a prescription for Prilosec at a very high dose that the insurance company won't cover so I can't start her on that and I also am wondering if I should just wait.

    If we get a gene positive result, I am going to beg for a biopsy immediately and hopefully she will grant that.

    In the meantime here are my daughters symptoms and I would love any thoughts:





    stomach pains (daily)


    food aversions



    Low IGF-1 and short stature (3rd percentile)

    delayed puberty

    low weight (3rd percentile)

    Secondary family member diagnosed with gluten sensitivity

    joint pain


    muscle pain

    For a 12 year old girl, she is very sedentary and lacks energy. She is frequently ill and very moody.

    Honestly, I know this sounds horrible but I hope she has it. I just need some answers.

    Any thoughts?