Child With Neg Celiac Blood Work, But Doing Well On Diet.

[I hate gluten]

Hi to all I am new here and almost cried when I found this forum and read some of the post. I thought I was the only one who is struggleing with a neg blood test, but still convinced it is Celiacs. I am a mother of twins (boys)5 and a singlton (girl)1 . one of my sons has been a struggle since birth. Fine motor delays, gross motor delays, severe ecezma, major attention issues and many other issues. I love him, he is the sweetest, kindest hearted child you will ever meet. But a child with a very very short attention span can drive the sanest person insane. After years of doctors being doctors, and me firing doctors (3 in 5 years) I finally have the doctor of my dreams. My family has a history of autoimmune disorders, and while doing my research for my mother (Chrons and possible Celiac - try not being able to eat corn because of chrons and having celiacs! now that sucks) I found my son and I fit the bill for Celiacs. I called my ped he said to head straight to the GI and off we were. Of course NEG!!! Frustrating. I took us both off gluten. ( I still sneak bread one slice twice a day until my test next week) I am so frustrated. It has been a week. I have to defend my self as to why I am putting us on it and explain to every one there is a high false neg. I have lost alot of close family because of it and I am angry about it. (Hense the screen name) . One good thing my husband is a saint and backs us 100 percent and the preschool has been wonderful. Now my big question. I have not seen my ped since diagnoses, and the school wanted a note for his diet and the GI doc said no since the test was neg. UGHHHH!! The preschool is ok right now since he only eats snacks there. I brought a big bucket of snacks for him. But I think it will be a different story in the big K. I will talk to the ped. But what has other parents done with neg test and poss results from diet switch with the school wanting a note? By the way. I feel very fuzzy headed after eating one peice of wheat bread that I take a nap after I eat it and eat the other peice before I go to bed. I can not even function well. I can not believe how it makes me feel. I guess i was so use to feeling miserable that it turned into normal. Sorry to rant. Thanks for listening and it is so good to know that i am not alone anymore

[RiceGuy]

Welcome! You've come to the right place!

Firstly, no matter what the tests say, I hope you never question your decision to go gluten-free. It is quite obvious to me that gluten harms you, and your son. Secondly, do pursue all the tests that you feel you need, for the school, your family, or whatever. If a doctor is uncooperative, find a new one. Often times, naturopathic doctors can be more helpful. Some members here have gone through dozens of doctors. I recently read a post from someone who was seeing their 50th doctor.

Another option is Open Original Shared Link, or one of the others that you can use to get your own testing done. They claim better accuracy, and many on this board seem to like them.

As for a note for school, I don't see why it would be necessary, as they can't force your child to eat gluten, can they? I mean, pack a gluten-free lunch for him, and that's that. This will also help avoid Cross-Contamination, or what we commonly refer to as CC. The school is not likely to be capable of offering truly safe, gluten-free meals anyway, IMO.

I'm sure others who have children of similar age can, and will, offer you some great advice.

[nikky]

Hi, i had a slightly different issue with my tests, positive bloods but negative biopsy, but you are right, there is a high rate of false negatives in coeliac, especially in young children. If you and you son feel better without gluten then there is obvously a problem, no matter what the tests say and well done to you for having the initative to try the diet.

If getting a positive diagnosis is important to you then there are other things you can do. You could get a different GI, you and your child should not have to suffer because of a doctors ignorance, no matter how specialised that doctor is supposed to be. Entrolab is the other option, but to get a positive test result your son would need to go back onto gluten. I personally have never used them but they come highly recommended by the people on this board.

As for the school needing a note, try to find out why. If you provide a gluten free lunch then there shouldnt really be an issue as long as they are careful with things such as playdough. This is a safer option anyway as most schools are unable to cater exaclty to the needs of coeliacs, so, as riceguy mentioned, Cross-contamination would be an issue. If schools accept allergies and other intolerances without batting an eyelid then they should do the same for coeliac.

Good Luck, and dont be afraid to see every doctor in the city if you have to.

[mimommy]

I think I speak for everyone when I say, "We feel your pain!" As for doctors, I can only say that you have to keep looking until you find the right one, the very best one for your child and your family. I know how it feels to have your gut tell you one thing and the doctor tell you another. My advice--trust your "gut"--both your inner sense of what is going on and your actual gut, or stomach. It took us a year to get an official diagnosis. We put our child on the gluten-free diet against the wishes of her specialist. My daughter felt better almost immediately after going off of gluten, and you just can't argue with results like that.

As for school, I'm not sure why they are demanding a doctor's note. Is this possibly due to an overzealous misunderstanding of the nature of the disease? Perhaps they are under the impression that they must remove all traces of gluten in the classroom/eating areas and want you to justify this (like with a peanut allergy)? I know that in some cases celiacs are this sensitive to trace or airborne glutens, but it doesn't sound like this is the case here. Maybe you can offer them a little education on the subject. I did this for my daughter. I sent her teacher, gym teacher, and principal this e-mail and link to celiacguide.org:

Open Original Shared Link

Dear ____ staff,

As you may or may not know, my daughter/son ______ has Celiac Disease, which is better known as a wheat gluten allergy. This is an incurable disease, whose only treatment is a strict gluten free diet. ______ began having symptoms _____, and has been following the food guidelines since _____. Please read the information in the above link to familiarize your staff with this disease and its symptoms and treatment. _____ is fully functional and otherwise healthy, as long as we adhere to the dietary guidelines. If you have any questions, please do not hesitate to contact me by e-mail or telephone. Thank you for taking the time and for being exceptional educators!

Sincerely,

_________

Feel free to use the above letter, change it as you wish, or write one of your own. Look around the internet--there are great resources and easy links to add to your letter. And remember, people can eat what and how they choose to. I wouldn't justify it to anyone if I chose to be vegan or give something up for religious reasons. I guess I'm just not sure why the school has asked you for a letter from doc?

[I hate gluten]

Thank you all so much for your responses. I am sad to say this, because it should not have to be said because no person should ever go through this, I am so happy that I am not alone any more. I am now working on trying not to be so negative and angry over all this. Does this sound silly. I have a wonderful family and my veiws on this is causing alot of people to look down on me, in my own family. Meaning they think doctors know best. This I know is their problems, but it still is so upseting. Any way I will do what I feel is best for my family no matter what. Why live life at 70 % when you can 100%. I can not wait to get to know the people here. And thank you again for your replies of support.

[Mother of Jibril]

I am so happy that I am not alone any more.

I know just what you mean

The beauty of this... once you get past the anger (which is a totally legitimate feeling)... is that the gluten-free diet is a healthy one. You might find yourself in better physical and mental health than the rest of your family... and if you're really blessed they might follow your lead! Plus, you'll feel empowered to take charge of your own health and the health of your children

Last summer my son (who was five months old at the time) was running a high fever, vomiting, and refusing to eat. Even though the pediatrician and the nurse on the after-hours line said he was fine... just give him a cool bath and some Tylenol... we took him to the ER because we knew something was not right. Turns out he had meningitis! It makes me angry to think what might have happened if we had just listened to the doctors.

Assertiveness is a skill that will serve you well in SO many areas of your life

[I hate gluten]

Mother of Jil I think thats what gets to my family. I fight for what I believe is right, and trust my gut. When my sons eczema was so bad, the doctor said just put this cream on it and wrote me a script. My gut and instincts went nuts!!! I said no, my family went nuts saying he will never feel better if I do not do what the doct says. I told them that the cream is just releiving the symptom not telling me why? Well after research I found allergies can cause eczema and I did not need a referal and off to the allergist I went. Milk allergy, peanut allergy, dog allergy and fish allergy. I treated the allergie and eczema was under control with eucerin lotion and occasional over the counter steriod creams. (ps fired that doctor because she told me before I took him to the allergist that she didnt beleive that a milk allergy in a infant/ toddler could cause eczema) My family never said anything about me trusting my gut, I guess because I didnt make a big deal about it, because thats how you are suppose to parent. 7 months after my instincts went nuts over that cream it was pulled off the market for causing cancer!! GUT right, DOCTOR wrong! Now on to the school district. My son has horrible fine motor delays. He is at a 4% out of 100% I went ahead and waited until next year to send them to K because they are boys, twins and they would be one of the youngest in the class. (another fight with my family) Plus my son was struggling to hold a marker because of the fine motor delays. ANYWAY, the school district came out and did developmental testing on all the kids in the district and told me he needed to go for an evaluation with special school district because of his fine motor. So I go and they tell me that there is no need to evaluate him> HUH!! Are you looking at the same paper work as me. The occupational therepist was walking by and looked at his paper work and said to the evil lady, dont you think you should go to the school and at least observe him? He writes like a dyslexic. So they came out and said he functions fine as a 4 year old and if I am worried to hold him back another year. WHAT!! So next stop, newspaper and poss. lawyer considering this is there job and there is a law call no child left behind and all I want is an evaluation to see if there is a problem. But all I have been doing is fighting. Im tired of it. I will not rest until I can help my son in every way possible even if that means I loose family and friends in the prosses. I love him he is my son. I will not give up! But I am tired and need a vacation. sorry to ramble- still not past the anger part yet. I thank the maker I am not alone any more!!

[Mother of Jibril]

My son gets eczema from all dairy products (and corn) too! I refuse to try gluten. Maybe this year we'll get him tested for allergies... I don't know if anything will show up. Intolerances and allergies work differently. Nothing showed up on my allergy test. At least now we know what the problem is and can keep him away from those foods.

I'm sorry about all the problems with your school district. Do you have any alternatives? I know some states allow open enrollment (you can take your kids to any school you like as long as you provide the transportation). There's also private school if you can afford it. I know it's your right to send your kids to their local school and to have them appropriately tested and taken care of... but sometimes the fight is just too exhausting.

My daughter is going to preschool at a little private school that we absolutely love. The kids have all kinds of special diets... vegetarian, vegan, no pork, no peanuts, no wheat, no ginger (a pretty unusual allergy), and the snacks cannot be "sugar foods." You don't have to give a reason! Just let them know what you want. The teachers keep a list and they're really good about respecting the parents' wishes.

[missy'smom]

I'm only able to get a short post out but see my signature about my son. You could allergy test and see if wheat shows up and/or as someone else mentioned test with enterolabs.

[I hate gluten]

my boys are in a private preschool right now, and I want to send them to private elementry but they use the same school district for special services and i would not be able to use any servises if I go out of my district for schooling for the boys. If they would only evaluate him to see if he qualifys, then they have great resources. I am going to get a private evaluation through my insurance, but the school district may not use that evaluation because it is not a non partial third party it is conciderd one of my choosing. I have to go through hoops to just get the list of third party evaluator. Which to me seem like they have more control over who I see than me. It is all BS and illegal. That is why we are contacting the newspaper soon at least to get awareness out, because there are other families at the kids private preschool that are getting told wacko things, and Im sure I am not the only one.

We had allergy testing done on him at the allergist last summer, you name it he is allergic to it, grass,trees, weeds, molds, and of course I live in the country. The allergist said he basically needs to live in a cemment room in the city with no trees or grass. No visible skin reaction to wheat, and the blood test at the same time shown no reaction to wheat either. He has out grown his milk, peanut, fish allergies he had as a smaller toddler which I am glad of. His celiac panel last week came back neg also.

I just got all new cooking product, and stocked up on gluten fee food. So we can both be strict on the diet to hopfully yeild results on him. I have seen results in my mood and energy within the last three days, so my fingers are crossed for my son. I am giving us 6 months strict before calling anything. Thanks to all for listening without judgement if feels good. Yes opinions are always welcome, but judgement is a different story

[shayesmom]

He has out grown his milk, peanut, fish allergies he had as a smaller toddler which I am glad of. His celiac panel last week came back neg also.

I have always been curious about allergies being "outgrown". My daughter no longer rashes out when she eats dairy. Instead, the issues are all behavioral and I notice problems with nightwaking, concentration, and memory. So I haven't bothered to re-test to see where she stands with that allergy because I'm still seeing symptoms that are clearly associated with that food. Besides, even when my dd used to rash out from it, she still tested as having a "very mild" allergy. I guess I am not all that confident on the sensitivity of the tests.

Our homeopath had also told me that I should treat the allergy as a lifelong problem. That even if it appears to be "outgrown", what really happens is that the allergy changes into something else....an intolerance or an autoimmune issue. Sorry...I'm rambling a bit. It's just that we have similar issues with the school (needing doctor's notes and such). And it's hard to explain "mild" allergies to them, let alone food intolerances. I'm also afraid to re-test because I am pretty certain the allergist will tell us she's "outgrown" the allergy when I know it's still an issue. And then how do I deal with the school? KWIM?

We were lucky in finding a GP along with our homeopath who are very supportive and supply us with the notes we need for school. As we don't have an "official" dx of Celiac, our GP chooses to label our condition as "gluten enteropathy". We were able to obtain this dx by having our doctor document my dd's progress on a gluten-free diet. We basically monitored weight and kept a symptom journal for the first 3 months on the diet. The changes were so drastic that there was no denying gluten was an issue. And her reactions to exposures are pretty severe....mild fever, diarrhea, vomitting, migraines.

I hear you on the issues with family. My mother and MIL were fairly supportive in the beginning, but as dd go better....then they started thinking that perhaps she's "outgrown" the problem. Never mind that the symptoms had only cleared once free of gluten, dairy, soy, egg, etc.. LOL!! The worst person we've had to deal with is an aunt who just refuses to even attempt to understand all of this. She was constantly trying to undermine the diet as well as verbally chastising us about our decision to stay on the diet as opposed to seeking out "pills that could help". And we always hear, "But a little bit won't hurt!" Luckily, we don't see much of her because although she means well....it is hard not to flat-out tell her that living with the issue 24/7...I think I'm a bit better equipped to understanding the problem. I LOVE the people who spend 15 minutes with you every couple of months and want to tell you how it really is! OH yes! PLEASE tell me more!

I've been at this for over 4 years now....I can tell you that in some ways, it does get better with the relatives. But there are always lingering doubts and they never stop questioning if you're doing the "right" thing...or if you're doing enough. It's really strange how these food intolerances seem to really shake people up. It's almost threatening to them. I think we're finally at the point where the immediate family is doing well with this. It took about 2 years to get there. The extended family? Mixed reviews. And I wouldn't trust dd alone with many of them.

As to school....I've seen some schools accept notes from chiropractors. Many chiropractors will support gluten and dairy intolerance. Your other option is to find a homeopath, MD or a DO. I wish I could tell you that a new pediatrician will help. But my experience with pediatricians has not been good. I prefer GPs....they're less opinionated and most don't have the time to tell you how much more they know about children in comparison to you, the parent.

Anyways, I just wanted to welcome you to the board. And to emphatically state, ALWAYS TRUST YOUR GUT INSTINCT WHEN IT COMES TO YOUR CHILD! Your gut instinct will not fail you.

[I hate gluten]

shayes mom- Thank you so much for your email. With the outgrown allergy, it was hard to accept. My main concern with it was his eczema. It cleared up drastically. But truly never went away. He was tested at 2 ( I think it is all a blur) and he retested at 5 and it was no longer in blood or on skin test. But like you said it mutated into ALOT of other allergies. Now outdoor. But I think the milk allergy is were I run into my problems with my family. Yes he "out grew" or what I call "mutated". They got so use to his special diet and then he did not need it after awhile. So I think they think it will pass also. I tell them the benifits. That a simple diet switch can drastically impove all the issues he has and yet instead of being excited, they rather he suffer and treat sympomatically. Makes no sense. My ped, like I said, it took me years to find and he is great. I am going to wait until his check up in 3 months to talk to him, when I can come to him with all ( fingures crossed) the impovements I see. He is a DO and i do not see a problem, i think it is just me thinking the worst and expecting judgement again. I guess you can say, my if this flys by my ped with him writing a note, then i will know for sure my gut was right about him.

Went out and bought all new cooking supplys last night for my son and I. it was kind of fun actually. We are setting up our own stations in the kitchen for our stuff. He actually went in the fridge yesterday and asked if an orange was gluten free and ok to eat. I was proud of him. I think his brother is alittle jealous though with all the attention we have put on making special changes for him. I think I may have my husband and him pick out some new things for the kitchen for their area also. my son loves all the food we have bought so far ecept the bread. Got to say, it did not pass my test either. Weird though. He never tried new thing before this. It may be because we have put such a lable on it as his food that he is will to try it. Went out before dinner though and he wanted to grab a bite somewhere, that was alittle hard to explain. instead when we went to the grosery store I grabed him an orange and a bottled drink. Went over well. Wouldn't beleive the looks I got though. Really is it that odd because it is healthy?! Kids walk through the store with cr*p foods all the time. But anyway.

Thank you all for the wonderful support, it has actually started to change my attitude alittle. You guys rock and thanks for your support.

[mimommy]

my son loves all the food we have bought so far ecept the bread. Got to say, it did not pass my test either.

Thank you all for the wonderful support, it has actually started to change my attitude alittle. You guys rock and thanks for your support.

Try these:

EnerG White Rice Loaf (in the pantry/baked goods area)=fyi, stays fresher if stored on counter

Food For Life (fruit juice sweetened) Brown Rice Bread (in the freezer section)=makes great toast

Enjoy Life Bagels (freezer--can be used as a sandwich bread substitute)=I pack these for my daughter on "bagel day" at school

And, yes, I agree--this forum does "Rock"!

[holiday16]

Just wanted to encourage you as we were in a similar position. Long story, but it started w/ me finding out that being sick the past 10 years was mostly due to gluten. My youngest dd that we were starting to take in to the Drs. because of digestive issues got so much better when I started cooking gluten-free that without any testing the Drs. all assume she is celiac. Had my oldest tested through Enterolab and after testing positive there, but neg. on blood tests went gluten-free. Major improvements! She went from a size double 00 to a size 5. I mentioned that to the GI Dr. and he said she's probably celiac then. I didn't tell him she doesn't have a celiac gene )

My son is the interesting one since we did the full GI thing with him because of his heart defect. We need medical support in case he is hospitalized again. Neg. blood test, neg. biopsy, but very high positive genetic test. Based on that the GI Dr. recommended trying gluten-free and we saw a drastic improvement. We thought his fatigue and irritability was heart related, but a stress test showed he was doing much better heartwise than he should have been so that wasn't it. Before gluten-free he was so bad I could not always get him up in the mornings for school and he was starting to miss. Also had to quit playing basketball and we weren't sure if he was going to be able to play baseball anymore. I would see him play w/ his friends and shortly into it he would tell them he had to rest. I hate to think where we would be if we had not looked into it more. I originally had him tested through Enterolab and his fecal fat malabsorption was 1254 which is really high. I showed this to his cardiologist explaining it was alternative testing and based on that w/ my history he thought we should see the GI Dr.

My dh is the most recent addition to the gluten-free diet. He had a genetic test done and it came back as really high risk for celiac, but his bloodwork was neg. He was supposed to have a scope to check his esophagus due to long term heartburn and they were also supposed to check for celiac, but didn't (don't get me started on that one)! He is on the diet now and has noted enough improvement there is no doubt he has issues with it.

So, all 5 of us are gluten free. Drs. are very skeptical, but when we lay out what happens when we have gluten it doesn't take long to convince them. It helps that my dh is at all appointments and backs me up. Sad, but many times women are seen as over-reacting. When my dh says the same things I do you can see the attitude shift. Sad, but it's the way it is.

If you can find a Dr. that believes you it will make things easier. I'm surprised the school wants a note. No one has ever asked us for one, but I think we have a really good school as far as that goes. The GI office did send us one, but we've never had to use it.

My family has been very supportive (my dad and 2 brothers are also gluten-free) to the extent my aunt even bakes gluten-free brownies for reunions. My dh's family not so much and it makes it hard. We don't see them often and I can't imagine living with that on a routine basis. Just stay strong and listen to your gut. I can't tell you how many women in the heart community have had a gut instinct that something was wrong with their child and turned out to be right...

Paulette

[I hate gluten]

Just wanted to state that I am sorry for all the mispelling and sentences that make no sense. WoW I must have been in a fog when I was typing earlier. Thanks again for all the support, it is what my 5 post and I am already not as bitter. Dont get me wrong I am still, but its nice to know when Im having a hard time dealing with people and the gluten issues I have somewhere to turn. Thank you all. I think I may start a new forum on some behavior issues kids have with Celiacs.