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researchmomma last won the day on February 14 2012

researchmomma had the most liked content!

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  1. If neuro issues are involved, like seizures, then most likely DQ1 is involved.

    DQ1 is DQ5 and DQ6.

    There have been some officially diagnoses DQ6 here.

    Neuro issues and gluten, and gluten ataxia:

    just google hadjivassiliou and you should find a numbers of articles, with mention of DQ1.

    probably googling gluten ataxia would bring a lot of info too.

    http://ataxiaalternatives.org/ is one of them

    here should be more about DQ1 adn neuro issues from gluten



    I find the genetics so interesting. I am a research geek though so that is no surpise. :rolleyes:

    Nora your siggy is interesting. So you had DH and you are double DQ5 not the classic DQ2 or 8. So very interesting. I am so curious to see what my DDs HLA DQ sequencing is. I will need help interpreting I bet. Since she has seizures I wonder if she will be a DQ1. I would love to show that to her neurologist. He is an open kind of guy and seems to be up on the latest info because his son has Epilepsy. We will see.

    Recently she has a numb pinky, completely numb.

    Thanks for the info.

  2. I love to cook and I am working to make my favs gluten free. Here is one of our all time favorites that is a crowd pleaser. AND it is so easy.


    Depending on your part of the country, you may not be able to get flank steak. You can use this marinade with chicken or pork loin too. It is so good.

    I use Tamari instead of soy and voila! Make sure you slice it against the grain.

    I serve with rice (or roasted potatoes) and grilled asparagus.

    Let me know if any of you try it or have questions.

  3. Just to clarify this statement, there are no "celiac genes". There are genes that are associated with celiac disease. It's not the same thing. Any doctor that tells you that you can't have celiac disease because you don't have the genes needs some re-education.

    Now that is interesting! And most GIs do not believe this. If you know one, please let me know because I will fly my daughter there for a consult. I run clinical trials and I plan to offer a wager to my GI at our next appt that there will be new data to show that all those biopsied confirmed celiacs without the genes ARE Celiacs even though so many GIs have come back and said "well you aren't Celiac because you don't have the genes". That is why docs tell us they aren't out there, because they turn them away.

    What upsets me more is to be told you can't have Celiac but they push out the door with a script a PPI. They don't even discuss Non-Celiac Gluten Intolerance or Gluten Sensitivity. That kills me!

  4. In the 3 years I searched for an answer to my rapidly declining health and excruciating pain, I saw dozens of doctors, specialists in 3 different states/(dentists even--for the jaw, skull and facial pain I also developed)/allergists/NDs & various alternative care types who said something like this: (with condescension and skepticism)

    "In my ___ years of practice, I have never seen a patient with these symptoms. You just need to relax and take this.... (starts opening script pad up) <_<

    To me, this was an implication that it was either all in my head or I was making it up! How do you "make up" a 90 lb. weight loss, hair loss, and complete loss of muscle mass, ataxia, or the 3 dozen+ other symptoms? :blink: )

    I would answer with: "Well, I am your FIRST then." :rolleyes: And I would leave the office in tears because I knew I would get no help from that person.

    Thankfully, the new GI doctor I found--thanks to another member on c.com :) --said "OMG! I have never seen celiac manifest in a patient the way it has in you. " (He said this while choking up because he felt terrible for how long it took for me to have my DX confirmed) This was accomplished simply by going back to my PC doctor after 3 years of hell and TELLING him--"Look, this is what I have!" He finally realized what had been staring him in the face for 3 years. This is a man, BTW, who has children with Celiac! He says (with regret) he did not know how it presented in adults. :rolleyes: Really??!! This is the same man who DXed me with B-12 deficiency, folate deficiency and watched me drop all that weight but thought it "was good for me" ( as I was so darn fat, I guess???)

    My DX is based on my slow recovery from the waking dead through gluten-free dietary compliance and double DQ2 genes--as my blood panel was NEG and the Idiot GI I had before him failed to biopsy when he did the endoscopy. (we still do not know why and the doctor won't answer my letters or calls)

    This new GI doc refuses to have me go back on gluten for that--which is good because there is no way in hell I am putting that poison in me so I can lose brain function again. He called what happened to me "a disgrace." He does want to biopsy me at some point to be sure the villi are healing. I said that would be okay--but only because I trust him.

    He also thinks celiac is the most underdiagnosed health epidemic we are facing. He also used the "tip of the iceberg" phrase. :) He loves when I bring him articles to read--he is not threatened or offended by it ---and he makes copies for his patients. He has asked me to speak to celiac support groups with him so others can see these symptoms are "not all in their heads". He said my story affected him deeply and that my whole health history should have been a giant neon sign saying "CELIAC". He says I saved my own life and my recovery will take a long time--but it will happen (well, we are not sure about the neurological burning pain, but we remain positive :) ). He also says doctors need to look at the whole patient, figure out the cause of the problem, not just symptom-treat. I love this guy!!

    He's a real "keeper". :)

    These are the doctors we NEED! Ones with brains. Ones who read a CURRENT medical journal every once and awhile. Ones who LISTEN to the patient and look at the WHOLE health history.

    Just my 2 pennies. ;)

    Wow, your story just stuns me. I guess it shouldn't. Every Celiac I meet (or gluten intolerant as well, they have some horrific stories too) has a story. Rarely is it as simple as, I was diagnosed after one month. I know they are out there but they are the lucky ones.

    Two of my friends almost lost their babies. I spoke to one of those friends last night and we again are amazed at the stupidity and ignorance of the doctors. This friend whose baby almost died figured it out herself but had to wait 3 months to get her baby into a GI. Unreal.

    So IH: maybe I should just fly my daughter out to see your GI! :D

  5. I believe Dr. Fasano is referring to other genes in addition to HLA DQ2 and DQ8 which are necessary to develop celiac disease, since we all know he is a firm believer in those two being necessary for whatever reason.

    I was a bit shocked when I read his statement. I am new to this as you know, but I am a scientist and that is a BOLD statement. My GI follows his advice I guess because in her mind you cannot have Celiac if you don't have the two genes. In addition, i don't think she believes in NCGI (I will be discussing this with her in Feb).

    I just read another article which quoted him and it said 99% of Celiacs have one or both of the genes. This is the problem!!! Mixed messages.

  6. I have one of those as well. Type 1 diabetes, hypothyroid, and so much more--- and ME with a DX!!!...but nope, she is not going to be tested. No way. I have begged but now, I have to back off so she does not get mad at me. I love my big sister.

    Makes me sad. But we are all adults and make decisions we have to live with.

    That's why J is lucky to have a Mom who cares so very much!! :)

    Thanks for the nice comment! Now I need to stop focusing on all of this so I can focus on work. I am obsessed but I know I will be fine once she is back on the GFD and feeling better. Whatever the outcome. I just read the article by Dr. Fasano on Gluten Intolerance and how everyone is coming out of the woodwork to say they have it so the GIs are :rolleyes: . I think my GI doesn't believe in it.

  7. Thank you everyone for your replies!! As of today I'm 9 days late. I have used clear blue on the 25th (1st pee)and got a positive (faint), I used clear blue on tues afternoon and got a neg. used first response on the 28th (1st pee)got positive. Used clear blue on the 29th (1st pee) got a positive, dr's test came back neg (probably 3 or 4th pee of the day). My last 4- 5 periods I was getting spotting a week before my period but I've had nothing at all yet. Normally I would have had some spotting around dec 14. It may be wishful thinking but I definitely feel pregnant.

    I forgot to come back and see your answers. So 9 days late should reveal a very positive pregnancy test. In other words, you should have tested positive at the docs office. My guess (and I am sorry to say this but I want to be honest) is that you are experiencing a chemical pregnancy or a blighted ovum. I had several of these while trying for five years to get pregnant with my second child. I also had some late miscarriages as well. Both are very emotionally painful.

    However, I could be dead wrong and you could have implanted late (maybe ovulated late). So take a pregnancy test in a few days as suggested above.

    If you have spotting before your period actually comes, it sounds like you may be low on progesterone. I don't know how long you have been trying to get pregnant or your age so I am not sure if it is time to see a reproductive endocrinologist but I will tell you this: if you think you have Celiac or NCGI, get tested and get to the bottom of this. Both of those diseases cause miscarriage.

    Also, if this is a chem pg or a blighted ovum, there is some good news from this, you know you can get pregnant. That is a a good thing but now you need to take care of this gluten issue as it may save you a lot of heartache in trying to get pregnant in the future.

    I am sure there are others with more advice. This is my two cents.

  8. Yes, hon, it makes sense in a way--- except you are all going to be suffering while you find someone wiling to do this scope. :(

    Why does she think there is a hiatal hernia? You have not mentioned this previously . Does she have HH symptoms??

    Her Dad has it. She also asked me what they would be looking for in a scope if not for Celiac. I mentioned hernias and erosion. She also is worried that there might be something more scary wrong with her so she would like the scope for those reasons.

    She is a smart girl and she knows it is best to get this out of the way now. She liked how she felt gluten-free so she doesn't want to have to do a 3 month challenge later. And she wants to feel validated or have medical support I think. I get that. I do think as she gets older she will realize it all doesn't matter, gluten makes her sick so she won't have it.

  9. Well first off, thanks to all of you for listening to me ramble. I come here and spill all the thoughts that are flowing through my brain. If did this with my friends (more than I already do) they would think I was nuts. They have all been wonderful though in making sure J has gluten free foods or snacks when she is with them. They have watched her suffer over the years and are eager to help.

    Mushroom and IH: really really great point on finding someone who is not a specialist. I will also consider what Domestic said about sticking with whom we have because maybe I can bring her some articles on NCGI and she will get it. I don't know. However, I may consider seeking a scope from a new doctor if our current declines. Maybe I should just make an appt now in case, I can always cancel it. I am thinking this because once she goes back on gluten, we aren't going back off. Look at the difference only two weeks made and going back is hard on her. She is being positive about it but I can tell she doesn't feel as well. Her eyes look different to me (puffy and darker circles than a week ago).

    So if we are going to do any more testing regarding this, it best be now!

    Raven: I have also heard of the positive biopsy (DH) and blood work but told not Celiac because of no genes. That is INSANE. That is wrong on so many levels. The literature supports that the two main genes cover 90-98% of all celiacs depending on what you are reading.

    IH thanks for having my back on all of this. It has been really frustrating but I am lucky since it is early in her life, although I do think she has had some significant effects from gluten already.

    Thanks all!

  10. Well not exactly. She is staying glutened until they tell her scope or no scope. If they say no, she goes gluten-free. If they tell her yes to the scope, she will go gluten-free after the scope.

    She knows she needs to be gluten-free.

    I did let her decide if she wanted to be scoped or not. I told her that they would probably find nothing which is why I ordered the enterolabs so maybe (maybe maybe) she would have some type of gluten sensitive gene show up.

    So no she isn't in charge but she wants the scope to also rule out haital hernia which is what her dad has.

    For her sake, I hope we can hear one way or the other regarding scoping her.

    I want a different doctor that understands that there is a real syndrome of NCGI so we can be followed and understood. Not to scope her, although I toyed with the idea of going in "blind" and saying here are her symptoms. But I think being honest is better. Anyway, I just want someone who is open minded to NCGI or gluten sensitivity instead of having to battle my decision to have her go gluten-free. Someone gets it.

    Make sense? If not, let me know. I am open!

    Just to be clear, the endocrinologist wants her scoped in hopes that they will find a histological reason to put her on prilosec, not to check for celiac (odds very very low since she doesn't have the gene, as you know). However, the endo did say, she will biopsy because it is standard protocol to do so during an endoscopy here at Children's. So I don't really give a rats a$$ about the scope because even if there is inflamed esophagus or stomach lining, I am not putting her on prilosec until we have been gluten-free for 6 months or so.

    Anyway, that is the history. Hubs thinks we should do the scope just to rule out the hernia which could contribute to her issues.

    Does all this make any sense?

  11. ok, Let me get this straight.

    She sees the direct correlation of gluten to her feeling so bad.


    she is demanding a scope??

    what is it exactly that she WANTS??

    a diagnosis of celiac?

    and if that does not come??

    have you explained there is such a thing as NCGI to her and it causes ALL THESE SYMPTOMS TOO--EVEN seizures?

    so, She will not go gluten-free and she will be miserable

    for the rest of her life??

    She risks more health issues down the road, even infertility? (I could never carry to term and lost 5...)

    You do have a real problem here.

    J is "in charge" and you are frantically searching for a GI who will do the scope. I hope you can find someone and fast.

    Sorry, Momma. :( I had hoped she would have been happy just feeling better.

    Well not exactly. She is staying glutened until they tell her scope or no scope. If they say no, she goes gluten-free. If they tell her yes to the scope, she will go gluten-free after the scope.

    She knows she needs to be gluten-free.

    I did let her decide if she wanted to be scoped or not. I told her that they would probably find nothing which is why I ordered the enterolabs so maybe (maybe maybe) she would have some type of gluten sensitive gene show up.

    So no she isn't in charge but she wants the scope to also rule out haital hernia which is what her dad has.

    For her sake, I hope we can hear one way or the other regarding scoping her.

    I want a different doctor that understands that there is a real syndrome of NCGI so we can be followed and understood. Not to scope her, although I toyed with the idea of going in "blind" and saying here are her symptoms. But I think being honest is better. Anyway, I just want someone who is open minded to NCGI or gluten sensitivity instead of having to battle my decision to have her go gluten-free. Someone gets it.

    Make sense? If not, let me know. I am open!

  12. They did 4 different tests on blood work before the gene test. Here's what came back.


    GLIADIN ANTIBODY, IGA 24 (Abn: H) 0 - 15 is normal

    GLIADIN ANTIBODY, IGG normal range




    strict gluten free diet.

    As stated, they would not do another endoscopy because they had done one 3 months earlier while checking for something else. From what I read on the biopsy report, lab only received 2 samples from the small intestines, which looked normal.

    The only thing shown in the endoscopy was inflammation of the stomach. Colonoscopy showed 3 small diverticula.

    Nurse for GI doc says go gluten free, regular GP says this really doesn't mean anything. It's very important to me, of course. My son came back with the same blood work, with an even higher Gliadin Antibody, IGA of 36.

    Take all this paperwork to a new GI that specializes in Celiac disease.

  13. Or my (former) GI's NP who wrote "aneroxic" on my report in 2009 as I withered away?

    I was a robust 215 all those years I went to that office (1998-2008) and was told I had "GERD" and "IBS" :rolleyes: and when I lost 90 lbs, my hair, muscle mass and I was in agonizing pain, she told me to take anti-depressants, acid reflux medicine and that it could not possibly be celiac because I was overweight. She snapped "you can eat gluten!" Your blood work was Negative. That my pain was "fibromyalgia" <_< and I should take drugs--those antidepressants are "good drugs" for that, she said.

    The GI doc she works under scoped me back in '09, but failed to biopsy for some reason I still do not know--and I became more and more ill for nearly 2 more years. Until I figured it out.

    I threw the scripts in the wastebasket and never looked back.

    My new GI has not said it, but he implies this is malpractice. Ya think??!!

    Yes, I wrote her --and that doctor---an irate letter after my DX--but as I suspected, I did not hear from them.

    See why people like Gemini, Ravenwoodglass and I do not trust the AMA anymore??? We would have died (or be in a mental health ward) if we had not persevered. Instead, we have chronic pain and other AI diseases as a result of remaining undiagnosed.

    Just plain wrong.

    This is horrible and the path that my daughter was clearly on. Sad that you had to Dx yourself. That is what the endocrinilogist accused me of on Tuesday. She accused me of standing in the way of my daughter's health. Are you freakin' kidding me? I am her ONLY advocate. Not my husband, not her pediatrician, not the ER docs, no one but me. I am the only one looking at the whole child/medical history. WTF?

    I keep thinking if I found a doctor that would listen to me, I could find someone that would accept GFD for a 6 month trial and let's see how she is doing then. But no, I am inhibiting her growth by denying her prilosec. An Adult dose of prilosec for 12 months. She weighs 70 lbs and we are going to give her an adult dose of prilosec for 12 months, really??? Add in Prozac too. GREAT.

    I just want to scream....

    My guess is that I will have her off the seizure meds in 6 months (the neuro can't figure out why she has seizures and but has an normal EEG between seizures and her seizures only happen yearly, probably when the gluten load is too much).

    But what do I know? I am just layperson who runs clinical trials around the globe and my neurophysiology degree means nothing as well. The internet just pisses these docs off because we come in with a potential diagnosis and if we are right we negate their reason for being.

    Rant over. Thanks for listening. :P

  14. How about if you ask under the DOCTOR section on the forum? Entitle it Looking for Good Celiac GI in the ______ area?

    That's how I found my New WONDERFUL GI doc

    :) :)

    I am so glad you found a good doc. That is huge.

    I am hoping to find a doctor who understands the realities of Non-Celiac Gluten Intolerance. Our current GIs thinking is if you aren't Celiac, you can eat gluten. That isn't helping me!

    Or maybe I just let this play out and see how it goes. J is still on gluten and fighting and bickering with everyone. She refuses to go gluten-free until she finds out if the GI will scope her.

    Maybe I should see if I can get in soon with a doc in another county and maybe they would just scope her if we went in and "started over". I just don't like the treatment we are getting here from the GI Celiac Specialist.

  15. It is true that you start wondering about people who have all kinds of things going on and they couldn't figure out why they are sick.

    To avoid CC, we use squeeze bottles for everything we can. However, I do believe at some point I might be able to get my husband to try gluten free to see if he can get off his meds. Just a two month little test.....wish me luck. My son would benefit as well but I need to go in baby steps with this folks!

    So IH and all, I have one more question. My GI clearly is antagonistic and isn't supporting a GFD to see if we can get rid of some of her symptoms without drugs. So I am thinking that I would like to have J followed by a doctor outside our city (all here in our city are tied to our GI who is a Celiac and gluten intolerant specialist). I would like to find a doctor that doesn't blow off people who don't have Celiac and can accept that maybe she has Non-Celiac Gluten Intolerance.

    Do you think I can find a doctor with an open minded approach or should I stay where I am and just hope that when we go back to our current GI, she is doing better and she agrees with my approach?

    I would love to find someone that is up to date on gluten intolerance/sensitivity not related to Celiac. Or do you think I am wasting my time? It would be a 90 minute drive each way to go see someone else.

    Thoughts please.

  16. researchmomma beat me to it!

    Strange as it sounds, the hpt's you can buy yourself (especially the dollar store ones - I kid you not) are sometimes way more sensitive than the ones they use in the doctor's office.

    I used a fairly sensitive hpt this time around (25 mIU/L - yup, from the dollar store) and the line was really faint until about 18 dpo (or about 4 days after my period was due). I'm still waiting a few days till I call the doctor's office to go in for an appointment, because I wanna make sure that their test will pick up the hcg, especially since I won't be peeing with first morning urine when I'm there.

    Let us know what day of your cycle you're on, and what brand of test you are using. The hormone that the pregnancy tests look for should double in concentration in your system every 2 or 3 days, so if you are pregnant it won't be long until the doctor's test can pick it up. But as reasearchmomma suggested, the beta HCG test (blood test) will give you a straight answer one way or the other, no need to worry about how dilute your pee may be.

    lol Exactly!

  17. See what happens from here. I am so glad that in essence, you DO have an answer and in a few days, she may just stop the gluten herself. ;)

    You have done a marvelous job here, Momma!!!--and I think you owe yourself a day at a spa.

    IMHO ;)

    IH: Yes, I do need a spa day. I can't wait to get her back to eating gluten-free.

    Hubs and I both felt that J would want the lab test showing that she is gluten sensitive so we ordered it. Now if it comes back that she has no sensitivity I am not sure what the heck I will tell her, lol. Knowing my luck, this will be the case.

    Regardless she needs to be gluten-free.

    So the other positive is that I finally convinced by BFF that she needs to be tested for Celiac. Her grandmother had it and she exhibits plenty of symptoms so she started with the blood work and we should hear back soon. She is a newbie and was floored that I have a separate butter dish and toaster. She thought that was a bit over the top. She is in for a ride! :rolleyes:

  18. I am going to jump in here because I am the queen of pregnancy tests. I had five miscarriages and secondary infertility so I know the ropes. So I have some questions for you:

    1) what day of your cycle are you? In other words, are you testing before your period is due?

    2) What brand of pregnancy test are you using? Some of those tests are WAY more sensitive than the urine dips in the doctor's office.

    Wait a few days and test again. If you are still getting a positive one week from now call the docs office and tell them what is going on and ask for a beta HCG test.

  19. well, I am not one to say "I told you so" (don't you hate when people say that!!--me too! :lol: )

    but I believe I told you yesterday in a PM that she should go ahead and eat all that gluten, feel sh--ty --- and she would make the connection in her own head and say:

    Mom, It's the gluten!! :(


    Now, what was that comment from the doctor about "Moms vs. the doctors who

    are right 99% of the time!???"" hahahahahaha

    The gluten "test" you just ran is better than any other test in the world.

    Happy for you, Kiddo!!---you got her--and your husband--to see the light. :)

    Cheers, IH

    I know! You did tell me that and so much more. Sure is nice to see it so quickly and significantly.

    We ordered the gene test (all HLA DQs not just the 2 and 8 that Prometheus gave us) and the antibody stuff too since her IgA was too low to be run properly. I think something will show up as gluten sensitive.

    However, my J is stubborn like her Mom so she is holding her breath for the endoscopy. The endocrinologist did not hear back from the GI (shocking) so I think after a few more days of glutening herself she will give up and be back to gluten-free. I have a hard time standing her with all this gluten in her system.

    I am pretty convinced that she doesn't have Celiac since she doesn't have the DQ 2 or 8 so I think the endoscopy is a serious waste of time and money but if she wants it and they will actually give it to her, so be it.

  20. Why is there all this mommy guilt over this? If a child suffers through no fault of your own, it's a learning experience and nothing any of you need feel guilty about. No one likes lost time but it happens to almost everyone who is born, in one way or another, and I think it's just a part of life.

    I think it very impressive when a younger child see's the light on a gluten issue and strives to stick to the diet. Hard for a kid who has more contact with the gluten filled world and friends who do not always understand. The self discipline required in being a Celiac who wants to be well will make them better adults, if you ask me. Stop the guilt, ladies. You are great mothers for trying to dig so deep to solve the problem! My mother never did that because her generation believed whatever the medical profession told them, without question. Not a good idea..... :huh:

    Completely agree! See my post above. ;)