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researchmomma

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researchmomma last won the day on February 14 2012

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  1. This brought tears to my eyes. She's seen it for herself and is on the path to healing. I'm feeling very proud of her for you, though I'm sure you need no help on that front!

    My son also had an epiphany and there is no turning back. A year later he still has some emotional issues with being gluten-free and needs some support. But he knows in his heart that he never wants to go back to feeling so bad, and this is the way to feel good. That is priceless. My heart hurts (and is full of guilt) for all the suffering our kids have been through - but also is joyful for all the years of their life they have ahead of them!

    I'm so thankful to all the people who came before them and fought for their diagnoses and shared their experiences so that the information was out there for us to find! We are truly lucky to have our answers while our children are still young.

    It sounds like you have been an amazing detective and advocate for your daughter and I hope you know what an awesome mom you are for that! (ps - have you considered getting tested prior to going gluten free yourself?)

    Thank you for the nice comments and it sounds like you are on the right road too. We can't feel guilty for what we didn't know about.

    Yes, I am considering asking my doc for the Celiac panel now that we are both eating gluten again but I don't know if I care. I am really supporting her but maybe I should consider it.


  2. nora.....my husband also came back as a double DQ-1 but his antibody testing has been negative. He does have symptoms but not the usual gut symptoms.

    You are from one of the Scandinavian countries? Do they recognize gluten sensitivity there and, more importantly, do they recognize DQ-1 as a gluten sensitive gene? Try telling an American doctor about DQ-1 and they practically laugh in your face. :angry:

    I would be interested in this too. We are Scandinavian. My grandmother died of duodenal cancer and had pernicious anemia. My mom has Graves and parathyroid tumors. So we are all interested in seeing if our families have a genetic gluten sensitivity.


  3. Nora_n, we lived in Europe for two years and the docs wanted to investigate her short stature but we were moving back to the States and I didn't want to start something there I couldn't finish. Such a bummer. I thought it would be easier here. NOPE.

    Holy Gluten Batman

    So we went on gluten yesterday in hopes that we hear from the GI about scoping her. I didn't say anything to J as I watched her have severe stomach aches, grumpiness and tantrums. I was hoping she would come to the conclusion herself. Well she did. By 6pm she was super tired and felt horrible. She said "I am mad for no reason, I am tired and I have a horrible stomach ache and sharp pains in my stomach and I think it is the gluten". It was amazing. My hubs said he thinks I am on to something! hahaha yup.

    J said she wants to stay on gluten to see if we get the test because she wants to know what this is. I tried to let her know that most likely she is NCGI and that they probably wouldn't see anything so if she wants to go back off gluten we can. But she wasn't listening because she was in a gluten cloud of anger and anxiety!!!!! We will see what she ends up doing but I saw it with my own eyes everyone!

    I have to say that maybe this was fate because when we go back to that GI in Feb she will tell her what this experience was like. I think I will have her write a paragraph on what it was like to be happy for the last week and comfortable to absolutely miserable.

    I was tired too and nauseated too. J asked if I would go gluten free with her for life and I said "YOU BET!".

    AHHHHH. so I am going to pay for the enterolab because I think she is NCGI and maybe seeing in writing that she is gluten sensitive will help her (assuming that is what comes back) but the real proof is in how she feels! I know my little girl is on the road to health as soon as she decides it's time.

    :D


  4. P.S. Listen to GEMINI-- :) I know her well & her journey was similar to mine and she is very celiac-savvy and she has researched her brains out, as I have----and she is healthy now ---after many years gluten-free. She and I both were jerked around by the AMA and we saved our own lives. ;)

    Doesn't it just make you want to scream? Doesn't it make you wonder why doctors don't know more about it?

    Our GI tested our daughter only for DQ 2 and 8. She didn't even care about the others that are considered alleles for gluten sensitivity.

    That ticks me off. I paid 300 bucks for that test that insurance probably won't cover and I could have paid for a full panel at Enterolab for 369. Which is probably what I will do.

    It really is maddening.

    Great advice by all.


  5. I know this conversation has been going on awhile but I had to add my 2 cents worth here. Listen to Irishheart! It blows my mind that doctors are willing to put children on Prilosec, never mind adults. That is just really bad medicine....the Band-Aid approach and it never works. I went to doctors for years trying to find out why eating some foods created excruciating pain in my gut and this is what they tried to do to me. I stopped going to doctors altogether and then hit the wall with Celiac at age 46....and developed 3 more autoimmune diseases in the process. Don't let this happen to your daughter....please!

    I am small and the shortest one in my family. The clues were there all along. If your daughter takes Prilosec, it will mess up her gut long term. Please keep her gluten-free and accept it will take awhile for results to be seen. Forget the medical profession on this one....they are idiots when it comes to diagnosing Celiac. If it can't be seen on an x-ray or in blood work, they close their already small minds.

    I wish you well!

    Thank you for adding your comments. It is helpful. I am really frustrated by the medical profession which has been unprofessional in my opinion.


  6. here is what I meant:

    Jordan is in discomfort 30 minutes after eating a Leggo's waffle and syrup.

    Miserable after eating gluten and 2 weeks of improvement on a gluten-free diet? then, it's a gluten issue. period.

    She needs to make the connection in her head. She ate gluten--she feels like sh-t.

    She immediately says "it's the syrup"!!! because she does not want to admit it is the wheat and you told me SHE LOVES LEGGOS!!. (it is gluten-free syrup right?? maple syrup only??

    Okay--- NOW have her eat one without syrup if you want to make your point!! (this is all I meant by manipulation--ladies, honest)

    I am married to a scientist/chemist. He taught me well. The only way to prove a point is to control the experiment. ;)

    No offense intended whatsoever. I have worked with children my entire career. I know how they push buttons. I worked my Mom's myself and when I was sick and had pain in my legs as a kid, she told me I was fine, go play. She feels rotten now because of my DX so late in life. I do not blame her one bit. How was she supposed to know??

    PS after my DX, She went gluten-free at 84 and feels great! No more GERD or Prilosec

    I will have her eat one without syrup. I think she will come to the conclusion herself anyway though. I am going to have her keep her diary very carefully this week and she may be able to see it that way herself.

    BTW, I was gluten-free with her and now back on gluten and I feel off! Nauseas, tired and crampy. Gluten is yuck!

    I agree with your controlled experiment since I run clinical trials for a living! That is why adding prilosec seems silly. Her Aunt's GERD resolved so can't we try gluten free first for two months? You would think any doc would be all over such a reasonable approach. But NOPE.

    hahahaha

    Back to work. Thank you Ladies!


  7. As I have said repeatedly to the OP, if your child is ill, that is a different story and I was in no way implying you allow them to starve. :blink:

    Domesticactivist you came late to this discussion that is several weeks old and you may have misinterpreted what I was talking about.

    Please do not take offense at my words.

    It was just a different view on a similar situation.

    The OP has been under constant stress and I was trying to help her ease up a bit. No need to be defensive about your parenting skills. I was not at all telling you what to do. It was meant to be an amusing story about a difficult situation, but clearly it failed.

    I backed you both here--I said MAMA knows best!!

    And you do not have to tell me what it's like to be misunderstood by doctors--I went through half my life being misunderstood, given drugs that did nothing, and misdiagnosed as I starved to death for 3 years. I had to figure it out myself.

    I have offered all I can in this thread and in PMs. I am sorry you are both under such stress.

    I have given you what I felt was IMHO my best advice and I hope some of it helped

    to

    DomesticActivist?? --you came in late to the conversation so you may not know what she and I have already discussed at GREAT LENGTH. In another post today, you mentioned you are under a gluten challenge and may be making you sensitive?? Maybe so, because you are overly-defensive and I'm sorry you feel so bad. Hope you feel better soon.

    My heart aches for both you and Jordan and I pray you find an answer. She deserves to be well. You deserve a break from the madness.

    Best wishes,IH

    I am not offended or upset at all. And I appreciate all of your help and advice. I think my post came off wrong because I think your advice not to be manipulated is sound. I am just at a loss.

    I know you have battled much more with doctors than I have and thankfully you have answers now. Anyway, thank you to you all.

    I really appreciate this forum.


  8. I know your children have various issues at play here and I have offered my two or three cents :lol: but at some point, I have to wonder--how much are they using food to manipulate you guys? Do you cave in because you are understandably exhausted from fighting with them about it and you want them to be happy?? It must be very tiring for you!

    I did this when I was a child when I was about 7-8 years old. I did not like most foods. I hated veggies (which is crazy because now, I LOVE them) and I wanted something else, not what they were all eating. My Mom refused to give in to those demands. I was good at whining and pouting, but she would not bend.

    I would sit with my plate in front of me: some of the meat gone, a few sips of milk gone...potato and green beans or whatever...still there, cold and lumpy.....Mom, dad, sister and bro---all done eating, dishes done and put away, lights out and they were watching TV.

    My sweet dad would come back into the kitchen and beg me to eat. Nope. I adored my Dad, but even he could not get me to budge. Finally, one day he said to me, "Baby, either you eat or you don't. But you will be hungry because that's what we are serving for dinner and your Mom is not running a diner. If you are hungry, you have to eat your supper." (Mom worked full time, too out of necessity)

    In a few weeks time, maybe because I felt left out sitting there and not having my cookies and watching TV?? --- I started eating the foods that were placed in front of me.

    He may have stopped an eating disorder right then in it's beginning stages. He certainly taught me a lesson about not yanking my mother's chain. He was backing her 100% on this --and I was most definitely able to sweet talk my Daddy to favor me. But not on this!! And I eventually put on weight and was a reasonably healthy kid and teenager.

    My 20's are another story. :rolleyes:

    Just sayin...sometimes it's not just about food intolerances, but merely a battle of wills, but really....who knows best and who's in charge??

    Mama!! :) Hang tough.

    I have done this but was derailed by her declining weight, delayed puberty, short stature, etc. She has been off and on a great eater. When she is feeling well she eats meats, veggies and starches. She doesn't like junk or processed foods. When she is sick (she physically looks ill), she takes a few bites and is miserable. So it isn't that she is a bad eater or likes crap foods, she seems to be having a tough time physically.

    I don't know. I am really close to giving up and giving her the prilosec. She can be on that until she goes away to college and then she can deal with it in her 20s. As long as she physically thrives under my care, I guess I should worry how she got there.

    It is all just too much to figure out on my own. Maybe I should just put her health in the hands of the doctors since they have done such a damn stellar job of helping us out until now. She is on seizure meds even though she has a normal EEG between seizures, asthma meds, eczema meds, miralax nightly, culterelle, etc. Good Lord.


  9. I told you my thoughts in our PM exchange.

    Constipation is often resolved with 2 BIG glasses of WATER every morning and a probiotic every day. Culturelle works well.

    Just try it, Please?? ;)

    If Jordan becomes very ill and uncontrollable emotionally because of her resumption of gluten, I wonder how long you all will be able to stand if before she makes the connection herself and says "Mom, you are right!" No gluten for me.

    I wish you luck, hon.

    Hey, before I read your post I just had the water talk with her. Yes, she is taking Culterelle but I did forget it last night. Yesterday was a mess.

    Thanks Domestic for your advice. When she is on gluten we are down to 400 calories per day and at 70lbs and 12 years old, she can't afford that. I will try to let her make her own choices perhaps but her daily pain effects our family in profound and significant ways. Our house has been peaceful but that ended last night after a gluten filled dinner (not sure it is direct but wow) so we will see where this takes us.


  10. What????? Because she was expected to? :blink:

    Well I don't believe her. She said she was faking feeling better because she we were talking about our friend's daughter who is getting a car for her 16th bday. Her parents said they were doing that because she was such a good girl, never complained or asked for anything. We were discussing that (not with her but she overheard) back in August. J said she wants to be good so she can have a car.

    I don't buy any of this. She doesn't want to be different and gluten free.

    This all came out after I told her that we might be having the endoscopy so it would be good to go back on gluten. She was so excited that she could eat whatever she wanted. However, by the end of the night she was a mess emotionally.

    She was worried that the endo would reveal a horrible cancer and she said eating gluten-free for two weeks only made her bowels hurt slightly less but she is still constipated. Then came the what ifs. What if the endo shows nothing, if we go on prilosec and that doesn't work, I always feel like this etc.

    Just for a stupid endoscopy I have put her back on gluten and undermined our progress. I think she believes I am doubting the gluten connection but I am not.

    My whiny, scared, sick little girl came back in full force last night at bedtime.

    I can't flip flop on her again so I will leave her on gluten until we hear from the doc (the endocrinologist said she would call if the GI refused the scope). If no scope, back on gluten until or Feb 9th appt. If a scope, glutened up. I am sure the scope will not be for awhile as the GI does not think we are an emergent case by any means.

    Wow, what a mess.


  11. So sorry you are dealing with crappy doctors. I am sure I am now labeled the WACKADOO :blink: in our peds' office as well as the whole clinic in our city as I was refused a second opinion within the clinic even though it would have been another office across town. The GI dr within the same clinic denied us as well saying he wouldn't take her because she's 17. Each time I called a place they'd open her file and read what the ped said...which I really don't know what she said...just know the last thing she wrote was "possible pulled muscle" (for my daughter who has had 3 1/2 wks of lower quadrant pain). I finally called a provider out of town 45 minutes away and they got her an appointment pretty quickly.

    Anyway, my 3 other kids just had negative biopsies for celiac...yet I know gluten bothers them. I had one son test positive on one of the celiac blood tests so something is going on. His muscle pain went away within 2 wks of a gluten free diet and came back horribly when gluten was added back in. After the negative biopsies the dr prescribed all 3 kids prevacid. ARgh. I can see why in the case of my daughter who has a hiatal hernia and eosipholinic esophogitis (sp??)...her esophagus was quite extensively inflamed. We are all going gluten free and I hope the prevacid is not needed. I know that my husband's severe indigestion went away immediately upon starting his gluten free diet. So I am pretty sure my kids will be the same.

    Good luck with your daughter. Do you think you could get a different GI doctor even if you have to go to a different town? You might feel better knowing they are starting fresh and not getting an earful from other doctors that have seen your daughter.

    CC

    Keep me posted on how it goes.


  12. Kimball Genetics division of Labcorp did our genetic testing and while we didn't get the full results back at first (the thing they returned to the doctor with a summary of risk), I was able to call the genetic councilor once I had the results from the doctor and have them send me the full results. It looked like gobbledygook at first but after a lot of time on wiki and some help from Skylark it all made sense. It's my understanding that Kimball, Promethius, and Enterolab all test HLA DQ alpha and beta where some labs only test beta.

    You might try calling the lab itself if you haven't already - maybe they test for more than they report.

    good idea!


  13. It is ery unfortunate that gluten free eating and celiac testing are antagonistic. Two weeks would, I believe, be the outer limit at which the result would not be affected and even then it may well be. In the absence of gluten the antibodies disappear at a rapid rate from the blood stream, and it is amazing how quickly the small intestine can start to repair itself. So even if you put her back on gluten today it may well be too late :( Or it may not.... But if you are planning on doing the scope the sooner she starts eating lots of gluten the better. I know you don't know if they will do it yet, but if you wait any longer before resuming gluten it will probably not be worth doing the test.

    This is what I was wondering! She would be thrilled to be able to eat Eggo Waffles again, lol. Well maybe I will have her go back on gluten until we hear from the GI. She didn't call today and I have a sneaky feeling that she is writing us off!

    I did order her negative gene results from Children's. She is gene negative for DQ 2 and 8. No other info and they do not test for half alleles. There are markers on the other HLAs for gluten sensitivity, I wonder why they don't test for those. So strange.

    If I put her back on gluten for a few weeks for this scope, what would be the best lab test to order for gluten sensitivity? I mean the private ones? Any thoughts?

    Thanks all! My sanity is slowly returning.


  14. You and I have discussed all this ad nauseum, Momma, but just for the record,

    like Raven & her family, my Dad, Mom and I were all on proton pump inhibitors (PPIs) for YEARS.

    I cannot describe all that happened to my poor Dad without bursting into tears, so I will not recount it (he was a celiac if there ever was one, but it's too late now)

    ,,, but for me and my Mom ?? That "GERD" disappeared a few months after being gluten-free. Neither of us need medication.

    I suffered HORRID burning pain from my mouth to my rectum for YEARS and THOSE DRUGS did NOTHING. I actually have LOW stomach acid, as it turns out.

    If in fact, J has an ulcer, h.pylori or esophageal erosion, then prilosec for a few weeks may well be helpful.

    Can they get you guys in sooner ??

    The misdiagnosis of Celiac is one of the saddest things I have seen. It is heartbreaking.

    Your history is another reason why I wanted to go gluten-free without prilosec.

    So here is my question for you and whomever else has an opinion: she has been truly gluten-free for two weeks so if we put her back on gluten as soon as they call to tell me they want to do the scope, will that be enough time? It would be hard to believe that two weeks of gluten free could fix her up if she is Celiac (although I think she is probably NCGI if anything).


  15. That was also my families experience. I was given handfuls of PPIs and told to just see which ones worked. After a couple weeks gluten-free I knew they were not needed. My DD only had Gerd and vomiting as far as her GI symptoms were concerned and both also resolved after she went gluten free without the aid of the Prilosec the doctor prescribed her.

    This is exactly what i wanted to do. If gluten-free resolved it, big smiles all around. If not, then we would have to resort to prilosec I suppose. I can tell you that even after two weeks of being gluten free, she was better by the second week. Better attitude (maybe she felt like she had some control over how she felt!), less stomach pain and less gas. Her friends often tease her about her gas issues but oddly, I haven't heard any of that lately and Family TV time has been less smelly! :P


  16. I'm sorry for the misery you and your daughter have been put through with these doctors. I can relate to the feelings of just wanting to know what's going on and wanting to go with natural, non-invasive treatments rather than bandaid medicines she has to take every day.

    I do hope you go ahead with the endoscopy and biopsy if she's still on gluten. Remember that if she's been gluten-free or gluten-light you can not get a valid celiac (blood or biopsy) test, though! They're saying 20 grams of gluten (not just gluten-containing food) a day for three months is what it takes. I'm currently doing this myself after a year gluten-free and it is not fun! It probably makes sense to do the scope looking for other problems even if you can't get valid celiac tests out of it.

    That said, there are many other ways to be affected by gluten. It is very possible that gluten causes your daughter serious problems without causing the typical celiac damage. Have you read "Healthier Without Wheat"? I think it does a good job of hammering on that point ;)

    My daughter is 12 and a half and has the bone age of a 9 year old. This is considered a GOOD thing by the endocrinologist, as it means she has "room to grow." There is such a thing as a "constitutional" growth delay, where the child's timing for growth and puberty is not the norm. My daughter is tiny - if you look at her on the 9 year old growth chart she's way down at the bottom of the range. She's never made it onto the growth chart for her own age. She doesn't have digestive issues, but has Tourette's syndrome, ADD, and anxiety issues. She was also an intensely picky eater.

    When we discovered gluten was the source of her brother's problems I had my hopes up that we'd figured it out. We had her keep eating gluten (but maybe not quite enough), and got blood work done. It all came back negative and her genes were negative as well. We also had her tested for Turner's syndrome which was negative. Your daughter should be screened for this even if she doesn't have the typical appearance. There is a mosaic form of this disease that is harder to test for and we did not test for that.

    Since our whole family was going gluten-free because of cross-contamination issues, she went gluten-free, too. Then our whole family went on the GAPS diet as well (back in February). I have seen some major changes in her - her ADD is pretty much gone, not much anxiety any more, and now she LOVES to eat. I think the diet has been good for her, but she still has Tourette's and she still is tiny.

    At her 6 month appointment had barely grown (her younger brother had gained something like 3-4 inches in that time and is taller than she is!) We're going back to the endocrinologist next month and they're going to check her hormone levels, vitamin levels, and probably other things, too. She has recently outgrown clothes so I'm very curious to see how it all stacks up.

    They seem to want to give her growth hormones which I am very cautious about. The idea is that once puberty comes on girls don't grow much more, so she needs to get her growth in now. I was a "late bloomer" and her bone age is low so hopefully she has more time. Height predictors put her at 4'7"! It's ok to be short, but they still want you in a booster seat at 4'6" so we're hoping those charts are wrong.

    I am sorry for everything you have been through as well.

    My daughter has been off gluten officially for two weeks but when we looked back at the last month, she didn't eat much gluten because she wasn't feeling well. She was down to fruit, chicken and a few veggies. However, I think if they decide to do the endoscopy, we will try to gluten her up for it. It will probably still be negative but that is Ok.

    I just don't want her miserable anymore. So whatever that takes.


  17. Sweetie,

    I have told you already, but I will say it again--you are NOT a whackadoodle. You're a Mom fighting for her daughter.

    OMG--where do I start with this Endo? :rolleyes:

    First of all, RAVEN said exactly what I would have said, and she's a Mom, too so her perspective is even better on this subject than mine---but I wish to add:

    This condescending attitude is not only insulting, it is laughable.

    The wildly erroneous assumption of the rate at which doctors are right? here is my response;

    :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol:

    ALL of the doctors I saw for YEARS got it WRONG!!

    What BS!! This doctor is playing the "party line"--The "all my colleagues are right and I'm not going to be the one to refute what was said to you."

    Do what you think is best. But if J's symptoms get unbearable while she's doing the gluten challenge....you have your answer.

    Make sure this GI does the BIOPSY CORRECTLY after all this. There needs to be 8-11 samples taken from various spots.

    If it's negative, it does NOT mean there isn't a gluten issue.

    As far as I know, there is NO scientific evidence that absence of gluten in a healthy diet stunts a child's growth or affects her health! What a bunch of crap. J's growth was delayed LONG before you started a gluten-free diet just a few weeks ago. This endo is way out of line making you feel guilty because you would rather find the CAUSE of her symptoms rather than have her on drugs.

    Try the prilosec, if you wish. But she wants her taking it for a year? It's supposed to be used for 14 days, with a 4 -month break. And here is the best part--she hasn't even scoped her YET ---so she does not even know if there are ulcers or esophageal erosion??

    yet, she's suggesting a YEAR of this drug? :blink:

    From Pub MEd Health:

    People who take proton pump inhibitors such as omeprazole may be more likely to fracture their wrists, hips, or spine than people who do not take one of these medications. The risk is highest in people who take high doses of one of these medications or take them for one year or longer.

    Some people who take omeprazole for a long time may develop weakening of the stomach lining."

    Yes it is disgusting that I let these doctors rattle me. On the flip side I am happy to know that that lab result isn't important and that she is probably a late bloomer. :rolleyes:

    Thanks for the reassurance that I am not a nutter. I know I come on here for constant reassurance but all of this information is just so overwhelming. I just need help figuring it all out.

    I agree that a year of this drug is out of line. Thanks for looking that up for me. Regarding a scope, I will only do it if we are going to make it worth it and she agrees to do biopsies. Who knows what she will say to that. I also have to get J back on gluten and I am not looking forward to the miserable days ahead.

    Booghead My daughter's aunt, unlce and father all take Prilosec like candy. However, her Aunt was diagnosed as gluten sensitive and went gluten-free. Poof, GERD disappeared. So I thought before we result to yet ANOTHER drug, why not go gluten-free for 3 months and see if it helps. If it does, great. She has so many other gluten related issues, I felt that it was a good course. I was hoping to go to the GI with a list of symptoms that had resolved or were improved off gluten. That's why. We have been battling this for 6 years, what is 3 more months? Also, her symptoms aren't really GERD. She seems to be battling an inflammatory response (swollen lymph nodes around appendix and constipation, among other things).


  18. You're not wacko you are a loving and caring mother who is desperately searching for the answer for your childs problems. Words can not express how angry I am at the way you are being treated. IMHO it may be worthless to have that doctor even do the endo since he has already decided she can't possibly be celiac he may not even look for it.

    You have some hard decisions to make. You can either put her back on gluten to prepare for the endo with your current doctor. You can look for new doctors while keeping her on gluten. Or you can keep her gluten free for a couple of months and see if she improves. Her being gluten free will not affect the results of testing for anything else that may be going on.

    I was just talking to my daughter about the appointment and she said "Mom, that endocrinologists thinks I should be scoped because she said "Why don't we get her scoped for reflux or ulcers; and the standard is to biopsy". So I am not sure if she was placating me and trying to get her on Prilosec or if she believes a scope would be useful.

    Prilosec isn't going to address her growth issues (or asthma, eczema, fractures, irritability, constipation, chronic bowel pain, etc). She does think it will get her to eat so she can grow.

    UGH, I don't know what to do.

    Feb 9th is the follow up with the GI. If the GI calls, I am considering telling the her that we will see her then after being gluten-free for a few months and then we can decide if the prilosec is necessary. I think you are right that she will not look for Celiac during a scope.

    Or I could bag on all of this and go to another GI but they are all related through Children's.

    Oh this is nuts. I think I need to let this go for awhile and start fresh tomorrow.


  19. I guess I knew we'd still do the gluten free house no matter what. I know each of us feels better gluten free so we'll just move on. My 12 yr old's esophagus was slightly irritated...but I don't think the nurse mentioned the dr wanting to do anything for that. My 10 yr old looked clear but because he has so many stomach complaints the dr prescribed an antacid. My 19 yr old daughter had pretty extensive Eosinophilic esophagitis. So the biopsy confirmed what the irritation the dr saw was. She also has a hiatal hernia which I'm sure doesn't help that either. The EE makes us realize what she has had problems with over the past 7-8 yrs with reactions to things. Her chest used to hurt so extremely bad I'd almost be bringing her to the ER.

    So the plan with her is to eat gluten free while home on Winter break from her college. Get her healthy and then hope that she can make some good choices with her food when she goes back. I think I will call up the college and have her meet with the nutrionist there...as I think they did have someone available. She's been very fatigued so my worry is she'll get herself feeling good again and because she doesn't have that celiac diagnosis the college won't do anything to help her with her eating plan.

    Ah..I know nobody wants the diagnosis of celiac...but it would explain so much. My 12 yr old son's blood work was positive and his muscle pain went away gluten free so something must be going on. My husband has to avoid gluten or he gets severely ill.

    The dr recommended genetic testing now. Is there any difference between getting the genetic blood test vs the swab of the mouth. I think our insurance pays 50% for a genetic blood test which would put us having to pay about $550...vs doing it on our own I think it was $300 for the saliva test through promitheus labs.

    Your daughter is old enough to make good choices, however, the school cafeteria may be willing to help her with what is or is not gluten free. She can't be the only person there eating gluten-free. Check that out.

    I am sorry that you don't have the answers that you seek, however, I would just go gluten-free and see how everyone does. It is worth it since it is not a prescription and easy to reverse if you don't see improvement. I know how you feel though. I am right there with you.


  20. Quick background: took my 12 yo to the GI at end of November. Because her blood work for the celiac panel was inconclusive she opted for the gene test which only tested DQ 2 and 8 presence. It was negative so ruled out Celiac and stated that without those genes Celiac wasn't possible. We know from this forum that is not always the case. The GI stated that she needed to be on a high dose of Prilosec for 1 year (40 mg) to see if this was the issue. This, in my opinion, is like a band-aid for bigger issues.

    Anyway, because she had a low IgF-1 level (abnormal) we were instructed to see a endocrinologist. We went today and she looked at all of her symptoms and asked: has she been screened for Celiac? Before I could answer she said "oh the blood work is negative". You mean inconclusive (the IgA level was 34 and normal is 67-XXX)? I told her that because she was gene negative the GI didn't do a biopsy or scope. She said OK, end of story on that. Then it got interesting. She asked me if she was taking the prilosec and I told her no. She asked why we went gluten free and I handed her the list of symptoms again. I let her know we had been gluten-free for two weeks and during the last week were are seeing some minor improvements. I told her I was sick of band-aids and seeing every kind of "ologist" known to man. She was upset with me. She is friends with our GI, lucky me. And she asked me why I was in her clinic. Again, I told her that our pediatrician sent us because of her low IgF-1 and she said even though it is abnormal, it is fine. I told her she should educate the pediatrician on what that test means and I got up to leave. I AM FRUSTRATED. can you tell? She tells us to hang on because my daughter is clearly small and underweight.

    So we do the bone age test so she can track her. My almost 13 year old comes back as age 11 bone structure. She tells me if we look at her like an 11 year old she is doing quite well and that she is probably just a late bloomer. What an interesting approach. Let's just consider her 11! However, she really believes her issue is GI related. She writes the GI an email while I am there and politely asks her for a scope for ulcers because I am reluctant to put her on prilosec without a proven histology. She tells me that I may be hindering her growth by not giving her the prilosec. GUILT. GREAT.

    She said I am over the top with all of my daughter's symptoms and she thinks that getting the scope to prove she has an ulcer, or esophageal erosion or whatever will convince me that she needs the prilosec. Don't they get it? My daughter has been going through this for 6 years. Some months/weeks she eats like a pig and the next month she has horrible stomach/bowel pain and can't eat. It isn't all the time. UGH

    I tell her about my SIL and her gluten sensitivity and how gluten-free diet resolved her GERD and she glazes over.

    So I am stunting my child's growth with a gluten-free diet and omission of a doctor's prescription.

    AND I may get the biopsy I wanted but now I am sure that it will be a normal biopsy and I will look more insane.

    This endocrinologist stated that every once in awhile a Mom is right but usually the doctors are right (99% of the time).

    So if the GI grants the endoscopy, I need to put her back on gluten. I guess I will wait to see if she grants it because the GI thinks I am a certifiable WACKADOO and will probably tell the endocrinologist that she needs to be on prilosec and I need Prozac.

    And I am pissed off that I am considered a WACKADOO because I did something non-invasive and non-prescription to help my daughter.

    Funny thing is, I am not sure I want that biopsy now. I am scared that it will be normal. How sick is THAT?

    I just re-read this post and I am a WACKADOO. :blink:


  21. Well, see the more you tell us, the more we can speculate on what the heck happened!

    J. could have some flu symptoms.

    um, 5 candy canes and hot chocolate? and were they all gluten free?? (yes, those can have gluten in them)

    Too much sugar can give ANY of us a stomach ache. Our guts are not equipped to digest that much at once. You should see me after a few chocolate chip cookies.... :blink: agitated and racy.

    Friends are VERY nice to check labels for her :) and thank God they text you....watch for too much MSG and hidden gluten. It may be best to equip J. with a tote bag of safe snacks. (fruits, nuts, chips, cookies, candy--- if she wants)

    You see, it's not about being "paranoid" about it ...but it is true that the more food you put in the mix, the less control factor you have to watch the effects on her and then, it is so easy for hubs or her to say, "see she feels crappy, so it's not gluten exclusion!!" because that may just not be true.

    Sorry about the dog (hate those cones--we always said our Gracie looked like she was wearing a lampshade and I called her "the life of the party" :lol: )

    and yes, all that stress is hard on you. This is why I said Take care of Momma, too! ;)

    Life of the party! Exactly. He is bumping into walls with it and my legs....he is so tired of it! Me too! :P

    Grandma did well with the gluten-free thing. My Mom is a super healthy eater and she had Jordan on a whole food diet for the two days she was there. She took bought gluten-free pasta and they had meats and veggies. However, I think she went a litte nuts on the candy! The candy canes were Bobs and the hot chocolate Nestle gluten free. So that was good. I don't think she was glutened. It think she was sugared up and beyond. Add to that the sprite with dinner. Holy Smokes!

    I like the idea of a "snack bag" at her friends. The mom's of her to besties are on board and have been asking me what they can give her. So maybe I will make up a Jordan snack bag for each household.

    After Christmas, I plan to chill out for a bit. I can't wait.

    Wine and a bath will be calling my name!


  22. C'mon now, Momma...what have we discussed so much the past 10 days?? :)

    That's right. It's a steady, slow road.

    Listen to my friend GEMINI here--she speaks the truth. She was/is my mentor from day 1--when I had symptoms galore and still felt wonky after MONTHS. She told me be patient.

    Does J always eat shirmp, hon? Could have been spicy, could have been MSG, blah blah blah. Eating out can be tricky and one celiac's experience is not the same as another. I mean, I am uber-careful & I got whacked from CC last week. :rolleyes: It happens.

    This is a glitch, nothing more.

    You know, we all still get wonky tums--and it is not from gluten.

    Don't get all scared on me now, kiddo--you're a trooper and you're an amazing MOM. PM me if you need me.

    lol! I know you are right.

    My dog had surgery about 4 days before we went gluten free. He has been wearing that damn cone so he can't get through his doggy door and I am up every night at least twice to let him out. I haven't had a good nights sleep in 2 weeks. I am averaging about 4 hours per night and trying to work and get my kid healthy. Then to top it off my son got the stomach flu this week.

    I am going to chalk up my emotions this week to lack of sleep. I am truly exhausted.

    Oh! and J had been with my mom who gave her five candy canes and let her have two hot chocolates all in one day. Then we went to Pei Wei when I picked her up and that gluten-free meal turned out to be sweet. I think she was sugar loaded. Your post to me on the other thread said to avoid sugar. Well that didn't happen! We talked about it last night. You will laugh. I told her that a friend on the celiac forum said to avoid sugar while we making the transition. She said "what's your friend's name?". She thought I was making it up. Too funny.

    She is on culturelle as well. Hopefully she starts seeing some improvement.

    I am impressed by her friends and their willingness to help her. When she is over at their houses, they read ingredients and look online to see if items are gluten-free. If they can't find the info, they text me. Nice eh?

    Back to whole foods and no eating out if it can be helped until I get the girl healthy.

    I think my mind started playing the "maybe it isn't gluten trick". She hadn't had that reaction since we took her off and it was a bad one.

    Thank you, thank you for all of the help.