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  1. I was at the celiac conference in Ohio last year. I lost my notes :( I',m looking for the study that followed those that tested + on the blood tests and had grade 2-3 damage . They split the group of grades 2-3 into gluten free and gluten. They followed up a few months later and those that had gone gluten-free had grade 1 scopes and the other group had grades 3-6.

    I would really like to find this study online so that I can link it as a reference when speaking about the scope not being the gold standard.


  2. No they seem to want to go right to the biopsy and have not even mentioned the blood test. Has your son had the biopsy and if so what did you think of the procedure I really do not want to go that route with my toddler. I will start to push for the blood test. Thank you so much for your support. If you can help with any advice I am trying to learn all that I can.

    Make sure you ask for the FULL celiac panel to be run. Antibody and gene test.

    Hope you figure out what it could be. Also there is a dairy induced auto immune disorder like celiac ( the name escapes me right now) you could look into milk and or soy if formula has been the main source of food lately.

  3. Thanks for all the advice. For me and her, the social part has been the hardest. She is really good about the diet and has been a real trooper. She is super determined to get better and stronger and is extremely careful about what she eats. At home we have the routine down. We have created gluten-free substitutes for most favorites.

    It is when we are out, it's ind of hard. People do seem to give you these looks when you bring food for a fifth grader. She absolutely does not like for me to make a big deal about celiac or even mention it to most people unless they need to know. I think it's more normal for people to bring food for toddlers. She felt like everyone just thinks she is super picky.

    About a week after we found out for sure she has celiac, she went to her very close friends birthday party where they were serving pizza and cake. I had explained to her parents, but they simply forgot and kept offering. She brought a lunch box with her own food, her own treat, but ended up in tears when they served the cake. It was more the feeling that she can't do what everyone else can.

    If she is embarrassed Id call the other parents before the event ans have a heart to heart. Just tell them a little about celiac then ask them not to ask her if she wants anything because her feelings would be hurt. Try to make cupcakes or cake up before you go to parties...easier said then done though. It will get easier.

  4. How old his he? I have heard of others taking their babies to an allergist to determine their sensitivities; I didn't but it may be worth considering if he's that miserable. Poor little thing :(

    Id try soy first 4 days off 24 hours back on 4 days off to figure out if its soy. Gluten 2 weeks off 1 day on 2 weeks off...soy an dairy often go hand and hand. I was dairy free / gluten free for a year oh what fun!

  5. We have a tiny kiddo here. Our ODD is really big for her age...we got the over feeding guilt trip with her and now with YDD its she isn't getting enough. The both eat health foods , can't keep them out of the garden! We don't eat allot of processed foods here because ODD has a dairy allergy...YDD has always eaten better then her larger sister as far a quantity at her age...so i just roll my eyes at the tiny comments.

    YDD is developmentally normal and happy. We have had some exposures that have resulted in weight loss ( dog food and a cookie this spring) but we are on the recovery path now and she is doing well IMO. Dr's love their charts!

  6. We are in the same boat with our two year old. We figured it out through breastfeeding that gluten was an issue. She grows now thats all we can ask for. I'm finding through my support group most kids are 10 before they get a + biopsy ( thats with sometimes even a family history) AND the kids have been sick often the whole time... We choose NOT to go on with the testing ( she stops eating and already is small, tube feeding would probably be the next step if feeding her gluten). She had a positive DNA test for DQ2 so right now we are just going on that...oh and the fact that she is NORMAL when she doesn't have gluten. Ive told them just to humor us and consider her gluten intolerant...

    I'm hearing that it can take 10-15 years before you can get a formal diagnosis. I at this time want a happy kid and if we can avoid the life long complications that go with this issue then that is our goal.

    Its rough we don't have support from DH's family and its hard to go to kids stuff right now ( cheerios and playdoh).

    SO I'd trust my gut and wait. We hope to do alternative testing like enterolab when we get the money together but right now we want her to be a normal 2 yo.

    Poop question if you don't mind my asking. When exposed does your LO's poop smell like fresh tar? We notice this with our LO and its not a common observation when talking to the Dr.

  7. I need butter, ice cream, & cheese

    Earth Balance is dairy and gluten free also tastes great.

    Ice cream - so delicious all of theirs are diary free and mostly gluten free...just read the label really well I think they are all gluten free ingredients.

    Cheese - that is a hard one...we "like toffuti brand cheese , sour cream and cream cheese...though its not like the real thing...not sure about gluten free so again read the label...all other brands taste like feet and not in the good blue cheese sort of way ;)

  8. Glad to see you have someones attention.

    The reason I recommended fluoride toothpaste in addition to your fluoridated water is because our kids' teeth need additional mineralization. Fluoride is a negative ion that sticks to the calcium in the enamel, making it harder. Some staining can occur from fluoride but at least the teeth will be more resistant to decay.

    I have a meeting on next Thursday with the pediatric chair of the dental school at University of Maryland where I teach. I hope to convince him to add Celiac's to our screening list.

    Hope you Celiac screening makes the list.

    I'm glad the dentist drama is over for the most part.... I informed dentist #3 we had been to others before and to stay on my good side ;) She helped me check the tooth paste for gluten ( it says its gluten free). She also does "happy" pills ( a.k.a valium) I feel much better about that then gas or putting her out...she has 6 cavities ( all facial) confirmed and I think I just saw a new one this week...still have to figure out the insurance issue also..I'm going to schedule the appointment for Sept and work the paper work out later I think...there goes $1000!

    now I still need to find a supportive primary Dr.

  9. We went to MedicAlert http://www.medicalert.org/FAI/FAI.aspx

    I really feel a lot better with her having it on all the time. It never comes off & the reps there are very, very helpful. I highly recommend them!

    I'm looking at this one:


    Its small enough for her wrist and looks friendly for a 2 yo.

    Any more suggestions or feedback? :)

  10. Well the paperwork came in the mail for dentist #3 and I already feel better about this one ( watch me eat my words ;) ) it was addressed to my youngest and wanted more family history and habit info... so I stand by my feelings that dentist #2 was a <_< he had a nice office in a fancy part of town but I guess that doesn't mean he is the most educated :lol:

    I'm going to go back to the xylitol tooth paste we used before..we don't use fluoride we have fluoridated water again and when we had well water last year her teeth actually looked allot better....

    I'm also going to work on getting her a medical ID bracelet in the next week or so. I found one small enough to fit her tiny wrist....I hope it cuts down on the family members trying to poison her.

  11. Well we have been to two dentists now. The first did not charge us and wanted to see Celiac teeth AND educate himself more. He referred us to a Ped dentisit ( #2). That one was not for us ( he kept saying her allergy was a "factor" , but that it was because she was eating to often etc. ) , He didn't know what Celiac was nor do I feel the urge to educate or argue with him further.

    We are going now to Dentist #3. YDD has 4 cavities that we know of now :(

    Wish us luck and support finding someone to work with that doesn't think she eats candy all day!

  12. I would send her to a dentist that specializes in kids. Try checking with your own dentist for any recommendations.

    Yeah....I haven't been in 10 + years...Ive never had a cavity or any issues LOL that would be a great place to start though.

    Every one that Ive talked to on the phone either had not ever seen a child with Celiacs OR my friends had said they have had there issues blamed on nursing , bad diet etc...the kid hardly ever has refined sugar , colorings , eat whole foods , out of the garden etc...I'm just wanting someone experienced.

    I'm thinking we will go with the guy I called and had 2 recommendations for and then if she needs any work I may then take her for a 2nd opinion...not sure..

    Dentist make me nervous.

  13. I think there is confusion!

    From what I have read MSG is a possible contaminate:


    It seems SOME people have an issue with it and it should be considered. Wither validated by an official source does not mean that people don't have an issue with it.

    My Oldest does not get her DTaP vaccine because its cultured in whey. A friend of mine doesn't get her son a flu shot because it cultured in Egg...he has a reaction EVERY time and seizures...but her Dr.s says its fine.

  14. Thank you for sharing, everyone! I just cannot believe how hard this part has been for us. It really helps to know that we are not all alone!

    And, lots of hugs for all of you that can relate to the rotten teeth. UGH!! I hope that we caught this early enough that we do not continue to have such extensive issues, but right now we have some serious problems. Hopefully, we will make it out OK, but we have a rough few days ahead of us, I think!!

    We are now headed off to an oral surgeon consultation tomorrow. They don't seem well versed in celiac - can anyone advise of things to watch out for when headed for oral surgery? Antibiotics and surgery suggestions are very welcome, as we are making important decisions about it every day now, and I find myself seriously limited in the amount of time that I have to do the research.

    Thanks again!

    Hope things went well.

    Did you get anymore info? We found a Cavity on our Youngest ( who has Celiacs) and we are going to take her...I should have sooner but no cavities and just staining...Ive had all I can of getting support from Dr.'s so I was not in the mood for this fight...

    So what did you learn?

    My DD is 2

  15. My daughter was sort of in the same boat. Here's what happened with her.

    When I was breastfeeding her she was projectile vomiting left and right, SO SKINNY. She was the scrawniest baby. They claimed she had reflux so I pumped her full of Zantac. Then I switched to formula. HUGE improvement. Then she started solids, immediate FTT, vomiting, diarrhea, it was horrible. THe NP at the ped. practice suggested I cut out wheat so I did and she got MUCH better but I still noticed stuff like Cheerios or barely teething things bothered her. They said cut out all gluten, so I did. But at that point she had lost SO much weight we had to go see a GI dr.

    He said she was also way to young for the normal tests to be positive, and besides that we had had her on a gluten-free diet for months before we saw him (It took forever to get in to see him). So he said in her case we'd do the genetic testing. IF she didn't have the gene then we could rule out Celiac. If she did have the gene (and no allergies to those foods) we could more accurately say Celiac. She ended up testing positive for the DQ2 gene. Given her very violent reaction to gluten combined with her FTT and the gene, he considers her Celiac.

    Can I have your kids Dr? LOL

    This was my YDD BUT we kept breastfeeding. I had an LC tell me to cut it out for 2 weeks and then test.WOW new baby! She wasnt making eye contact or acting normal before ( also FTT)...but after the elimination she was a normal baby.

    FF to age 2 we got a full celiac panel and she also has DQ2. Our GI Dr. is a !@# and wont give me a copy..thats all the info I could squeeze out of the nurse on the phone. I concider her celiacs because its extreme her reaction...so worse comes to worse she is intolerent and her mommy is crazy! boo!

    You should be able to get the gene testing done vary young.

  16. We are having an awful time getting through to our confrontational family members ( DH's parents) .

    Right now I'm going to show them Discovery channels medical mysteries ( like mother like son season 1) about celaics..to put the fear in them. We are though trying not to make this a big tado.

    We have had allot of gluten containing slip up ( last time was them not taking a cookie that she picked up because they felt bad taking it) lately and want to really bring it home how serious this is with out getting angry at them.

    This for now is for our 2 yo so she cant advocate for herself. We don't allow any alone time with the IL's anymore but the last issue happened when I was at a party and was focused on my oldest for a moment..only took a secound. My IL's saw it and allowed it to happen...

    Anyway and really simple info or videos that you know of would be great. In laws cant read well so the simpler the better.


  17. Interesting! My sister's son also weaned around the same age. One more thing to add to the list of reasons why I suspect he has a problem with gluten. ;)

    My youngest was about 4 months when we ( after our testing through ellimination) went gluten-free . she was close to weaning because she would not latch long or often , just scream and arch her back all day long. I fought hard and wont go into that but at 6 months she was nursing normal and often. her teeth are stained in the front from low enamel from gluten. That whole first year was a fight.

    We had a great easy birth at home.

    Gluten DOES pass through breast milk. dispite what our Gi said , sigh

  18. Matter of fact they just got their annual blood work done at the children's hospital just this past Monday. Now that they have been gluten free their Celiac Panel should be negative. That does not mean they no longer have Celiac...that means we have effectively removed all gluten from their diet. Just thought I'd clarify that in case it cause confusion.

    Thanks for the info! OUr panel came back negative but the Gene test came back + . I told them that being gluten free ( I think the GI didnt think I really had her really gluten-free) that the test would not come back + other then the gene test. We worked vary hard and took gluten out vary early ( at age 12 weeks) because it was vary obvious that this was the issue. We felt feeding gluten and damaging her , have to do a feeding tube switching formula when we again KNEW what the issue was just to quilify a test was not in the best interest of our child. What damage would it do if we kept her on it? S

    We are going to get a full panel blood test done on our 4.5 yo at her 5 year appointment ( she is gluten-free/CF for right now). She will be eating gluten quite a bit for a few months before the test because unlike her sister she has lesser symptoms and we feel she can do it for the time needed but she will NOT be getting the Endo.

    Hang in there! kids at this point don't really know they are eating different then most. There will always be time to feed them gluten later and get the testing done when they are more developed. Esp if you already see a huge difference then thats what really counts!

    Dr.s mato : First do no harm!