Am I Making A Mistake By "diagnosing" My Daughter Ourselves...

[HeatherG]

I posted recently about my almost 7 year old. She's had horrible constipation, reflux, abdominal bloating and other symptoms most of her life. Her first celiac test was when she was 18 months old. All the tests were negative except IgG which was 89 (very high). We recently had the tests run again since nothing else has helped and she again was negative except for IgG. It was positive but the number wasn't as high. The doctors now say she hasn't got celiac or gluten issues.

I still want to try the gluten diet. My question is what happens then. I have read multiple places that having an actual diagnosis is important for things like school, camp, and the teenage years when they want to eat like their friends. I have a feeling judging by my experience with GI docs that even if she improves on the gluten diet they won't believe she has an issue. Do I push for some kind of testing that proves it? Do I wait to go on the diet until they either figure out that something else is wrong or the celiac shows up in the blood?

I want her to feel better obviously - but I don't want to spend the rest of her life convincing people she's sick and that I'm not a nutcase mother.

Thanks

Heather

[Guest nini]

You are not a nutcase mother and my six year old does not have an official dx. I did get her pediatrician's support in trying the diet. And because she responded so favorably to the diet, her pediatrician put in her chart that she is "gluten intolerant" that is good enough for school, we are completing the end of the first year of kindergarten and she has done great, no problems and lots of support from the teachers, principal and school nurse. Mostly because I have been so proactive in educating them.

My advice would be to try to get your pediatrician to support trying the diet, and give it a good effort, and then if she shows positive response, call it "gluten intolerance" and just get on with the business of getting her well and keeping her well.

I would be glad to offer any tips or suggestions along the way, feel free to e-mail me at nisla@comcast.net

[VydorScope]

I completely agree with Nini, she nailed it perfectly,

[tarnalberry]

ditto what nini said.

[SurreyGirl]

  HeatherG said:

I want her to feel better obviously - but I don't want to spend the rest of her life convincing people she's sick and that I'm not a nutcase mother.

Thanks

Heather

Hi Heather

You are not alone living in this "parallel" world.

My son is 14 and whilst he had various symtomps all along, when he started getting neurological problems, I was so glad that I found out about gluten that we went on the diet overnight just to see what will happen - and the change was staggering. With all the blood tests inconclusive, I managed to convince the pediatrician about diet improvement and he accepted this. We eventually managed to get the HLA typing and this was the only thing that confirmed the susceptibility apart from diet (DQ1).

Even with that I don't really run around with a doctors certificate, because most of school etc places accepted my written note (we are in UK tho).

I sometimes think of it as a lifestyle choice, rather than a medical condition just to keep my head sane. In many places you are better off providing packed lunch than relying on someone else getting it wrong. I also realised that replacing gluten stodge with gluten-free stodge is not the answer either, so we never really bothered with prescriptions, becuase I try to keep grains to bare minimum and use lots of veg instead.

Gluten intolerance is so unreal to many that I don't even bother to explain that in depth anymore to all and sundry, only some. And I always thank my lucky stars that led me to discover gluten evils.

[nettiebeads]

I agree with nini. Although you could try Enterolab, I suppose. My dr. thinks that the current tests aren't sensitive enough to rely on them completely. And he belives that maybe as more is learned about what celiac does to the body, that more sophisticated tests will come about. I read somewhere that some in the more forward thinking medical community are doubting the reliability of the current tests and think that the diet challenge IS the most reliable (that's how I was dx'd). If one's body feels better w/o gluten, then go w/o gluten. And as one mother to another - TRUST YOUR INSTINCTS!!!!!

Hope you get the answers you need.

Annette

[gfp]

I think your concerns for the futire are valid so I somewhat take a different viewpoint perhaps than others so far.

There is no harm in getting a full suite of tests with enterolab etc. assuming you can pay have insurance etc. and if you think you will have to do this in the future then perhaps its better now.

Once you start a gluten-free diet and presuming it works how will you feel having to put her back on gluten to get testing?

Many of us have gone down this road ourselves as adults and for me the idea of going back on gluten to get a biopsy to confirm the bloodwork is not an option.

The problem with the diet is most peope start off in good faith but miss details like cross contamination and hidden gluten. they see an improvement but feel they are missing something and eventually discover a few suspect items and .... its a long road. Once you get down thius road it is incredibly difficult to make a decision to go back down it again and deliberatly poision yourself (or your daughter) in order to get tested.

[Smunkeemom]

you are not alone, my 4 year old had pos. blood tests but a neg. biopsy (she was 3 then) and her doctors refused to diagnose her as celiac. She started getting sick last year, so I put her on the diet, she is 100% better and they still won't dx her with celiac because I refuse to put her on a gluten challenge (why would I knowingly make my kid sick?!) anyway, they say since she didn't have D, she wasn't a "typical celiac" and they can't dx her without a biopsy (I am starting to find out there is no "typical celiac" and that the doctors here suck big time)

I think I will try what nini did and try to get gluten intolerant on her chart, maybe that will help.

[wonkabar]

  HeatherG said:

I have a feeling judging by my experience with GI docs that even if she improves on the gluten diet they won't believe she has an issue. Do I push for some kind of testing that proves it? Do I wait to go on the diet until they either figure out that something else is wrong or the celiac shows up in the blood?

I want her to feel better obviously - but I don't want to spend the rest of her life convincing people she's sick and that I'm not a nutcase mother.

Thanks

Heather

Heather-

Trust your instincts as a mom. NO ONE knows your child better than you. If you're a nutcase mother, then me and everybody else on this board is too! If you don't plan on doing any additional bloodwork or having a biopsy done, I'd start her on a gluten free diet immediately. My son has had many "classic" symptoms of celiac disease since he was about 18 months old. No one every mentioned Celiac Disease to us. We found out about it watching Keith Olberman on MSNBC...he made a comment about it one night. We looked it up and to our surprise it sounded just like our then 2 year old. I had a ped GI from a highly respected group tell me my son was "just fine" from a GI standpoint and that the changes in his behav were "purely coincidental", not the result of putting him on a gluten free diet.

After almost a year of trying different dietary changes, allergy testing, bloodwork, etc. we put him on a gluten free diet in March. That was the ONLY thing we hadn't tried a second time. He's doing great on the gluten free diet...there's a major learning curve as I'm sure you're figuring out!! He's sleeping better, his behav is soooooo much better, his poops are "normal", his eczema is better and so on. You don't need to convince anyone that your daughter is sick and will continue to be sick if she ingests gluten. My pediatrician has been very supportive of the gluten free diet and agreed to say my son is gluten intolerant based on the positive dietary response. He's not willing to Dx with celiac b/c his labs were negative and we wouldn't put him through a biopsy (he's only 3!!). This type of support certainly helps, but it wasn't a deal breaker for us. I could've cared less what any doctor told me considering I was the one who saw what he was like before and after the gluten free diet. We did just send back the stool/gene test kit to Enterolab. Even if that comes back negative, I'd never put my son back on gluten knowing how sick and miserable it makes him. You may want to consider that. It may give you some additional information and it's non-invasive.

--Kristy

[Guest nini]

I forgot to mention that my daughter's ped. GI was supposedly THE expert on Celiac in that office, and he was so dismissive of my assertions that she had it, because I had been positively dx'ed, I had been sick ALL my life and my daughter had ALL the same symptoms I had as a baby. He refused to consider a dx of Celiac and dismissed me as a hypochondriac mother. So needless to say I don't have much faith in supposed expert Dr.s opinions. Most of them are still operating on such outdated information, and they are unwilling to consider that a parent knows their child best. That is why a good pediatrician is crucial. If you can get a good ped's support in trying the diet, that is a win win situation.

[KaitiUSA]

Some doctors just do not get it. I completely agree with Nisla. Do what would benefit your child.

[NSG]

My daughter Beth was dx. in 1989 before there were blood tests. And the dx. was made without a biopsy. She was 8 weeks old and failure to thrive. All other tests were negative and the ped. GI suggested a gluten-free diet. She started to gain weight and at 6 months he told us is was Celiac - "a rare disease" - and at that time it was! He also told us that the only way to comfirm a dx. was a biopsy. but she was too young and too medically fragile to survive it just for the sake of "official dx."

We have been through numerous doctors [in 3 states] and everyone of them suggests that we have a biospy. My response - you will not make her extremely ill just to comfirm what we have known for 17 years! When she cheats [she is 17], she gets sick. Otherwise she is healthy and a normal teenager.

Beth has recently turned into a gluten-free advocate at her school. We went to NYC last Fall and found a gluten-free restaurant that sold shirts with "NO FLOUR POWER" on the back. She wears it every chance she gets. Try telling her that she does not have Celiac.

Trust your instincts! And if your crazy - then so am I!

Nancy

[gfp]

  nini said:

I forgot to mention that my daughter's ped. GI was supposedly THE expert on Celiac in that office, and he was so dismissive of my assertions that she had it, because I had been positively dx'ed, I had been sick ALL my life and my daughter had ALL the same symptoms I had as a baby. He refused to consider a dx of Celiac and dismissed me as a hypochondriac mother. So needless to say I don't have much faith in supposed expert Dr.s opinions. Most of them are still operating on such outdated information, and they are unwilling to consider that a parent knows their child best. That is why a good pediatrician is crucial. If you can get a good ped's support in trying the diet, that is a win win situation.

I think the problem is Dr.s only see the disease from afar. Having been through this yourself firsthand it is far easier to pick up on symptoms and nuances that a GP would never notice.

Its ridiculous to think that in a few sessions your Dr. can even being to know your child like you do....

[TCA]

My story is the same as everyone else's here for my son: Inconclusive bloodwork, 2 negative biopsies, tried the diet, decided it was a miracle, never going back. His Ped GI decided not to put anything on his chart for now because he said the biopsy is the gold standard and it was negative. He said a celiac diagnosis has a lot of negative implications for insurance and things and he knows me very well and knows I will keep him on the diet no matter what. I'm fine with that, but I know he's the kind of dr. that I can go to later and get him to change that if needed. He asked me how any further testing or diagnosis would change the course of treatment. I told him it wouldn't, so he said, what's the point of putting him through anything else, then?what he said made sense, so I'm fine with that.

I'm not worried about a dr. excuse or anything about his diet. Family can see the change in his health, so even the naysayers are convinced. I'm his mother and I can feed him what I want. I don't need a dr. excuse for that. If anyone decides to sneak something else in, it would be very eveident as he would have uncontrollable D shortly thereafter.

If you're looking for more tests, did they check for an IgA deficiency in the blood work? If not, they should because this can skew the IgA test results. You can also do a genetic test, we used prometheus, to rule it out.

Good luck and follow your instinct. God gave us those for a reason!