Tired Of Doctors/tired Of Testing

[dharmamomma]

Hi there!

I'm so happy to find this forum!

About 5 months ago we realized that that something just wasn't right with our now 20 month old. 2-3 hour crying spells, loose stools, headaches, joint pain, night waking, rashes and speech issues. For those first 15 months we thought her problems were due to natural childhood things: teething, roseola, pediatric diarrhea and so on.

Our family practitioner was the first one to suggest food issues, but suggested we go to specialists to be sure. At the same time, I found out that family members had/have Celiac/food issues/liver problems/digestion issues. Our PCP suggested pulling gluten and dairy from her diet. We saw positive changes, but not enough for me to feel like our daughter was on the mend. I decided to pull eggs and soy from her diet as well. After a month of being gluten/dairy/egg/soy free we have seen a drastic change in her health and behavior. To me this is the most telling tale - but not to the medical profession. Luckily our PCP is on board with our path.

Over the past 3 months we have been told that we are insane (after a visit to the ER with high liver levels and dehydration), that she has Autism or Cerebral Palsy and much more. We got her allergy tested but we were told, "oh, this isn't a sure thing, you can still be allergic to a food but not test positive. A food elimination diet is the best way to test food allergies."

We have averaged 2 doctor's office visits a week for the last 4 weeks. Frustrating every one.

Yesterday we finally had a chance to meet with a pediatric GI specialist. I told him our tale, and he listened nicely, but wanted to do a blood panel anyway (she has been gluten-free for over a month, so there is a really good chance she will be negative). So I ask him what his next step is if she does test negative. He told me that we would add gluten back into her diet and see how she reacts. I told him that we already did that, and she got sick again. He just looked at me and said, "well we will try again to see what happens."

To his credit he did know that not all Celiac kids look the same. My daughter has no outward signs - growth is good, very chubby, and so on. It was the constant loose stool (during one of our many ER trips, we found out she was also constipated...all through her GI tract) and other issues that brought our primary doc to the diagnosis of Celiac.

As I was looking on our doctor's notes for the lab, he diagnosed my daughter with Celiac, but still had her panels run. It was so frustrating to me to see this. Why didn't he just say, "sounds like it is all working out, let's just keep an eye on her as she grows"? Instead I had to take her in for more blood work and more tests? It is no joke when I say that she has been to the doctor more in her life than the rest of my other kids have been in theirs combined.

I know this must seem like a total ramble, but I'm just so frustrated with the medical community and their lack of compassion and desire to help. "More tests, more blood work, sit in my office (we have been in doctor's offices for up to 5 hours before seeing a doctor), you don't know anything because I'm the doctor..." and so on.

Thanks for reading...I just wanted to get that out. Also, I'd love to know how other parents deal with having a Celiac kiddo with the rest of the kids are not. Half of the family is Gluten-free Casein-free, while the other half is not. Do you turn your house/kitchen over to the gluten-free side of the family, in order to avoid contamination?

Thanks!

Peace,

Kim

[Darn210]

Welcome Kim!!!

You have found yourself a wonderful source of information, opinions and advice.

Well, it certainly sounds like you've had a trying experience and I hope it all comes to a conclusion soon . . . although it looks like you've got your answer.

I've got one Celiac child. The rest of the family was tested and came back negative. I have a mixed kitchen. The pantry items are all gluten free but I have a separate cabinet that contains gluten items (crackers/cereal/cookies/bread). All my cooking and baking is gluten free - I find this easier than preparing separate meals. However, you need to do whatever you need to do to keep your daughter safe from gluten. My daughter was six when she was diagnosed and her brother was eight. They understood the rules. A toddler is a different story. If you have a mixed kitchen now and it's working for you than go for it. If you're having problems with keeping gluten away from your daughter than you may need to take the household gluten free. I always told my son (& husband ) that if my daughter started having cross-contamination issues, then I would take away their gluten cabinet. So far (for over two years) we've been good.

[EmilyR83]

we have switched over completely to gluten-free. My son is 14 months old that has celiacs and my other son that doesnt is 3. At first I tried to do the mixed household thing. But the 3 year old was constantly dropping crumbs(that the 14 month old would eat). Or trying to be sweet and share-etc etc. Caleb(my 14 month old) got gluten probably 3 times in the first month of him going gluten free. I decided to cut it out completely. Caleb has only had one incident(when we were eating out). I would suggest that for at least a while going all gluten free. Like someone else said-you can have a seperate cabinet for the banned contents.

[Ahorsesoul]

I agree about all the testing on little ones. I would do new tests but refuse (at this time, maybe later) to do repeat tests.

I have a gluten-free kitchen so I do agree with EmilyR83. Especially with little ones who don't realize they shouldn't share.

When my ds was little he was put on the Feingold Diet. I just put the whole family on it rather than make him watch us eat things he couldn't. What was funny is the neighbor commented that my dh seems so calm and relaxed. This neighbor had no idea our family was eating on the Feingold Diet. So it made a big difference for my dh also.

[Mama Ruthies]

Hi Kim,

Your daughter sounds so much like our son but we didn't realize he was being affected until much later. He also had rashes, night waking, 4-5 bad diapers a day (not extremely runny), and the biggie for him, speech regression and delays.

We found out through Enterolab when he was not quite 3 1/2 that he had DQ8 and DQ7 and he tested high for everything on the Enterolab tests. We know he needs to be off gluten the rest of his life. He has gotten gluten three times since he was gluten free (plus probably some incidents when we first started out). The first time he got a piece of gluten pizza and his speech was severly affected for 8 weeks. The next two times were a month apart (a year after the first glutening) and again speech slowed WAY down for 8 weeks. He also stopped feeding himself---this came back after about a month. We know he got the gluten by a change in his BMs---not diarhhea but very quick coming---to the point he can barely make it to the bathroom. I cry because I know what we're in for with his speech which we have worked so hard on.

We had had our house gluten free except for wheat bread for our kids that aren't affected. After the second glutening which happened here, we have eliminated all gluten from our house. We had a friend's kids staying with us and somehow he got gluten---we think maybe a sandwich was left out. I want to know that no matter what he gets in our house, he is OK. Accidents happen. It is so freeing to me now to know that I don't have to be aware of any food that might have dropped or been set down somewhere and accidentally left (this happens with adults as well as kids). When we are at other's homes, I feel like I have to keep checking on him and make sure he doesn't get something he shouldn't have.

I so know what you mean about the doctors. Our son was having terrible headaches last year. We saw our pedi and she suggested we get his adenoids looked at. Saw an ENT who put him on antibiotics for a sinus infection (which did help), saw his allergist who said our son needed his adenoids removed (and she doesn't usually advocate surgery", and then the ENT kept pushing for a CAT scan. We refused and said that there were two of our son's other doctors recommending the adenoid removal (our son was suffering from sleep apnea as well as headaches). The ENT did go through with the surgery but it was a hassle to get there. I have learned through our son (and my dad who has had health issues for years) that we need to be our kid's advocate. Our pediatrician is a friend of ours and will tell us if we aren't happy with a doctor to switch---we are paying them for their services. It is so frustrating when all we want to do is help our kiddos!!

Oh, I reread your post and our son didn't show any signs of losing weight, etc. He was always within the healthy range for weight and height. I'm so thankful we found out that gluten is a poison to him when we did---wish it would have been earlier, but so thankful we now know!

I wouldn't go through any more tests. You know gluten is an issue for your daughter and have seen positive responses to the diet.

[deelind]

SOunds exactly llike what I went through with my son this time last year- first we did gluten and dairy and saw some changes it wasb't uhtil we did complete elim diet that we saw big changes and then not again until we increased his vitamins- his vit a and e and d were all too low- been on elim diet since april- big jump in speech after we increased vit- google celiac and apraxia and there is a new research acticle just published with similarities to celiac, food sensitivities and speech issues- we did the MD thing- we found a holistic practitioner whp started us in the right direction- we saw regression in everyting after a few slip ups on diet- he also did not have weight issues- but did have rash, irritablitiy, extreme sleepiness and neuro issues- all seems to be improving- wehave a mixed kitchen but we are all eating healthier and less gluten- my son will be 3 this month and he always asks before eating something when we are out and he knows what is his and what is not in our home- rec you have his vitamin levels checked

Hi there!

I'm so happy to find this forum!

About 5 months ago we realized that that something just wasn't right with our now 20 month old. 2-3 hour crying spells, loose stools, headaches, joint pain, night waking, rashes and speech issues. For those first 15 months we thought her problems were due to natural childhood things: teething, roseola, pediatric diarrhea and so on.

Our family practitioner was the first one to suggest food issues, but suggested we go to specialists to be sure. At the same time, I found out that family members had/have Celiac/food issues/liver problems/digestion issues. Our PCP suggested pulling gluten and dairy from her diet. We saw positive changes, but not enough for me to feel like our daughter was on the mend. I decided to pull eggs and soy from her diet as well. After a month of being gluten/dairy/egg/soy free we have seen a drastic change in her health and behavior. To me this is the most telling tale - but not to the medical profession. Luckily our PCP is on board with our path.

Over the past 3 months we have been told that we are insane (after a visit to the ER with high liver levels and dehydration), that she has Autism or Cerebral Palsy and much more. We got her allergy tested but we were told, "oh, this isn't a sure thing, you can still be allergic to a food but not test positive. A food elimination diet is the best way to test food allergies."

We have averaged 2 doctor's office visits a week for the last 4 weeks. Frustrating every one.

Yesterday we finally had a chance to meet with a pediatric GI specialist. I told him our tale, and he listened nicely, but wanted to do a blood panel anyway (she has been gluten-free for over a month, so there is a really good chance she will be negative). So I ask him what his next step is if she does test negative. He told me that we would add gluten back into her diet and see how she reacts. I told him that we already did that, and she got sick again. He just looked at me and said, "well we will try again to see what happens."

To his credit he did know that not all Celiac kids look the same. My daughter has no outward signs - growth is good, very chubby, and so on. It was the constant loose stool (during one of our many ER trips, we found out she was also constipated...all through her GI tract) and other issues that brought our primary doc to the diagnosis of Celiac.

As I was looking on our doctor's notes for the lab, he diagnosed my daughter with Celiac, but still had her panels run. It was so frustrating to me to see this. Why didn't he just say, "sounds like it is all working out, let's just keep an eye on her as she grows"? Instead I had to take her in for more blood work and more tests? It is no joke when I say that she has been to the doctor more in her life than the rest of my other kids have been in theirs combined.

I know this must seem like a total ramble, but I'm just so frustrated with the medical community and their lack of compassion and desire to help. "More tests, more blood work, sit in my office (we have been in doctor's offices for up to 5 hours before seeing a doctor), you don't know anything because I'm the doctor..." and so on.

Thanks for reading...I just wanted to get that out. Also, I'd love to know how other parents deal with having a Celiac kiddo with the rest of the kids are not. Half of the family is Gluten-free Casein-free, while the other half is not. Do you turn your house/kitchen over to the gluten-free side of the family, in order to avoid contamination?

Thanks!

Peace,

Kim