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Test Negative, Diet Results Positive, What To Do?

abbysmom

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abbysmom Rookie
abbysmom
Posted

I guess I should first say that I don't have an "official" diagnosis myself. I stopped eating gluten after 1 Dr. said I was nuts, then later went to Dr. who gave me an "unofficial" yes for Celiac, due to positive dietary changes. Anywhoo...my oldest daughter will be 4 in 3 weeks. She is a tiny thing, weighing only 26 lbs. until 2 months ago. She had horrible diarrea and stomach pains. Her ped. ran the test, it was neg. I decided to start her gluten-free in November, just to see. She started having normal bathroom visits, no more stomach pains, and she now weighs 29 lbs. To backtrack, she had only gained 2 lbs. in the previous 2 years. So I guess my problem is, since her test was neg., the Dr. thinks I am crazy for having her be gluten-free,even though it seems to be helping! I don't know what to do. I am tired of trying to defend myself. I see a different child when I look at her.

The other issue is my other daughter will be 1 tomorrow. Her 12 month appt. is next week. I have yet to introduce gluten to her diet. I was waiting until she was 1, but now that it is here, I am scared! I have just seen how horrible it made meand her sister feel to eat it, I am so nervous to give it to her! I am also afraid of what the dr. will think about that, even though she is thriving on what she is eating, and is growing fine.

Please help me! Any reassurance or help you can offer will be greatly appreciated. I just feel like I am losing my mind....

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rinne Apprentice
rinne
Posted

Hi and welcome. :)

Trust yourself and find a doctor that recognizes dietary changes as a diagnostic tool for your child just as you did for yourself.

I don't have a "official" diagnosis myself but I do have a sister and brother with the "gold standard" biopsy. In my opinion this "gold standard" is just another example of the brutality of our medical system.

To explain, the biopsy uses the Marsh Scale which defines four stages in the destruction of our villi and it is only when the destruction reaches the third stage that is clearly seen, at the fourth stage of destruction there may never be any healing. So to be clear, at the first stage and second stage people are suffering and are tested, it is missed, and told they do NOT have Celiac, look to this board and see how long it has taken many people to be diagnosed and how many health problems they have in addition to Celiac as a result of not being properly diagnosed.

It is wonderful that your daughter is doing well on the gluten free diet and you should not have to defend your choice to anyone. A doctor who asks that of you is a monster and an idiot in my opinion. Can you tell I hate doctors? :lol:

Nancym Enthusiast
Nancym
Posted

Nicely put, "brutality of the medical system". It can be very brutal. You gotta look out for yourself and your children. Trust your instincts here.

dilettantesteph Collaborator
dilettantesteph
Posted

I just came back from my first GI appointment after a year gluten free. They told me about people who test negative yet have celiac symptoms and respond to a gluten free diet. Called gluten intolerance. They don't understand it, but acknowledge that those people need to be on gluten free diets too. You need to find a doctor who is aware of this, or just ignore him and go gluten free anyway. It will be much better for your and your son's health to have a gluten free household anyway.

Mtndog Collaborator
Mtndog
Posted

If it helps, it helps! I was VERY lucky to have a doctor who didn't care what my test results were- she and I both knew I felt better off gluten and she was very supportive.

With your daughter that just turned 1, you can introduce it and then stop if it causes problems. If the doctor is not supportive, then find a new one or ignore him or her.

You are NOT crazy at all. Stand strong and be proud that you're doing what it takes to keep your children healthy! :D

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

I have never given gluten to my 16 month-old daughter. Her doctor said she totally understands since she saw what my son went through (she diagnosed him with Celiac). She said if it works then continue. Don't let a doctor bully you. Follow your mom-instinct. If your daughter is healthy and growing then I would not change a thing just because a doctor pooh-pooh's you.

The Kids Folks Apprentice
The Kids Folks
Posted

Hi - My 7yr son also had a neg blood test. So our pediatrician said that he didn't have it. We decided to go gluten free b/c we couldn't handle all of the meds for constipation anymore. He reacted POSITIVELY to the diet!! WOO HOO - no more constipation, he's growing, sleeping etc. Our ped's however, was quite snippy with me when I told her that we decided no more meds and no biopsy. Needless to say we are now looking for a new pediatrician.

I say go with your mom instincts!! As they say "mother knows best".

The Kids Folks

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taweavmo3 Enthusiast
taweavmo3
Posted

Like everyone else said, you know your children best. I have one daughter who tested positive at the age of 3, but she was very sick. She still has lingering effects from being so malnourished, and it has been four years.

After watching my dd struggle to learn things she should have learned in her first 3 years, I could not take any chances. I put my third child on the diet when he was 2, and my fourth child has been gluten free since birth. One day, when they are older and can tell me how they feel, I may let them eat regular food. But I wanted to be sure that they did not get sick during the crucial developmental stages.....those are hard fought years to get back if lost.

Also, my 9 year old, who didn't go gluten free until he was 7, has Psoriasis (an autoimmune skin condition). He tested negative for Celiac, but the diet still helped his minor tummy issues, and while it hasn't cleared up his psoriasis, it seems to have at least kept it pretty mild. There is such a STRONG genetic link at play, it only takes one parent passing on one gene to each child to show symptoms. I see putting all my kids on the diet as a small preventative measure for their future. Once you acquire an autoimmune disease, you have it for life.

Our last pediatrician was less than supportive as well.....we moved on. Our new one doesn't really question my food choices for the kids (even though I get the sense that he also thinks I'm a little nuts, lol) as long as they are healthy and thriving. He showed a little concern over them being dairy free, but once I started rambling on about all the different foods they eat that have calcium, he backed off, lol. Good luck to you!

abbysmom Rookie
abbysmom
Posted
  • Author

Thanks for the support guys! I really needed that reassurance. Looks like we will continue to be gluten-free, and if the Ped. doesn't like it, we will look for a new one! Thanks! If only dr.'s were as nice and understanding as you all...

HopeMum Apprentice
HopeMum
Posted
Thanks for the support guys! I really needed that reassurance. Looks like we will continue to be gluten-free, and if the Ped. doesn't like it, we will look for a new one! Thanks! If only dr.'s were as nice and understanding as you all...

Also, it may be worth mentioning that a gluten free diet can be more healthy!! It's not like you're choosing a poor diet for your baby, what doc wouldn't agree with that?

Claire

sugarsue Enthusiast
sugarsue
Posted
Thanks for the support guys! I really needed that reassurance. Looks like we will continue to be gluten-free, and if the Ped. doesn't like it, we will look for a new one! Thanks! If only dr.'s were as nice and understanding as you all...

I wanted to mention, if you look for a new doctor, check out a Dan! doctor. They specialize in children with autism, but this means that they are familiar with conditions that go along with autism, which include problems with the gut and they are huge supporters of the gluten free diet! Our pedi is a Dan! doctor and he has given us great support and care.

Good luck to you! I wish I had known about gluten free a long time ago. Maybe my 6 yr old would not still weigh barely 40 lbs and size 4 clothes!

Worriedtodeath Enthusiast
Worriedtodeath
Posted
But I wanted to be sure that they did not get sick during the crucial developmental stages.....those are hard fought years to get back if lost.

I have to second this. While we have recovered, my daughter's development still lags. She lost so much SO VERY MUCH. We gave digital photo frames to the grandparents for Christmas loaded with picts from the last couple of years. I cried thru them. The obvious change when being flipped by you in a matter of seconds - you go from that happy, fat smiling snuggly lovable baby to the thin,stick figured, detailed bone structure, dead eyes with no sparkle, no joy, no life in them. hair that looks like chopped straw from some insane crazy scissors accident and then the pictures begin to flip by showing the weight gain, the glowing skin, sparkly eyes, laughing smile, beautiful hair... Breaks my heart. I can't watch the slide show. It's too painful.

As for development, she still is behind in her speech and many brain development stages. You just can't develop mentally when you starving to death. Her brothers were so much farther ahead in being able to count, say things, point to objects... She has a ways to go in that area.

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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