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Tests Not Working! Doc Help In Md

angell

By angell
in Doctors

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angell Newbie
angell
Posted

Me and my mom and almost my whole family have celiac. My little brother (3) and little sister (1) have been to multiple doctors. They have a rash of clear tiny bumps that feel like fish scales that they itch til they bleed and it is hell putting them to bed while they itch. This has been going on for months. My little brother has been in and out of the ER to get fluids from vommiting in the night so much and being so skinny from not gaining any weight like I used to be when I was younger before I knew I had celiac. My sister is pretty thin herself too. My brother has also became very misbehaved. They have gotten blood tests for celiac and allergy testing and been to all types of doctors but none of them say its celiac! The only thing that came up was a cat allergy! But I KNOW it has to be celiac! There has not been a whole week that one has not been sick with a virus or psnuemonia. Me and my mom decided to stop giving them gluten eventhough the doctor told us not to because he insist they do not have it and my brother is a sweet little boy again. He has not thrown up and the rash has dissappeared on both of them. We went to easter and some of the ignorant family members that dont believe in being gluten intolerant poisened my brother and sister when we were not around. Tonight they have been itching their bodies like crazy and their bellies are puffed out. I just dont understand what the doctors are missing! Its been a dramatical change since we stopped giving them gluten but it never came up in any tests! We live in the Baltimore MD. We need a pediatrician and adult doctor that is familiar with celiac. or any doctor at all that knows their facts. We have been to the specialist at University of MD but they were no help and mis diagnosed me for 13 years of my life so I do not have that much trust in them.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Have they seen a dermatologist? The rash sounds very much like DH. If a biopsy of the tissue next to the lesions is done the antibodies will show if it is DH. Not all derms are familiar with DH, mine was diagnosed as poison ivy for my entire childhood so I am including a link to the NIH's celiac awareness campaign that talks about DH specifically.

Also it is not uncommon for children that young to show a false negative in the blood testing. In countries where they routinely test all children for celiac they wait until age 4 and then test again at puberty. With celiac in the family chances are good that they are impacted also as you have seen from the result of gluten-free and the challenge. In the end you do not need a doctors permission to have them eat gluten-free but it does make dealing with school systems easier if you have a diagnosis.

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seashellp Newbie
seashellp
Posted

My son is now nearly 16, he has had problems with chronic bloating and looseness in stools with severe abdominal pains on and off since he was 5. He has been tested twice for coeliac ( i'm coeliac and have crohn's) as well as crohn's and all have come back negative.

I tried him on a completely gluten free diet and as if by magic he feels 100 percent better. The doctor he see's is great but just can't get to the bottom of it and has suggested he sticks to gluten free for most part!

I know I can just give him gluten free but it's baffling that we cant find the cause of this and its been dragging on for so long.

He finds it really difficult to stick to the diet whilst at school and out with friends but of course the symptoms just rush on back!

ravenwoodglass Mentor
ravenwoodglass
Posted
My son is now nearly 16, he has had problems with chronic bloating and looseness in stools with severe abdominal pains on and off since he was 5. He has been tested twice for coeliac ( i'm coeliac and have crohn's) as well as crohn's and all have come back negative.

I tried him on a completely gluten free diet and as if by magic he feels 100 percent better. The doctor he see's is great but just can't get to the bottom of it and has suggested he sticks to gluten free for most part!

I know I can just give him gluten free but it's baffling that we cant find the cause of this and its been dragging on for so long.

He finds it really difficult to stick to the diet whilst at school and out with friends but of course the symptoms just rush on back!

Not everyone with celiac shows up positive on blood testing. Up to 30% will have a false negative. If you are celiac then most likely with his response to the diet he is also. My doctors not telling me even what I was being tested for or the high rates of false negatives cost me many years of my life. I would go with the doctors advice and encourage him to continue with the diet. Sometimes the body can tell us what testing cannot.

ang1e0251 Contributor
ang1e0251
Posted

I say, yes, if they are doing well on the diet then that is your answer. Is there a special reason why you need the dr to say it is celiac disease? He's showing a dietary response to the gluten-free diet and many allergists will accept a response like that as indicative of gluten intolerance.

The dr's lack of dx seems to be causing you a lot of anxiety. You know from your own experience that dr's have a hard time pinning down celiac disease in small children. Maybe you can just let him relax with the diet for awhile. Your Mom can keep her ears open for a good dr.

  • 2 weeks later...
karenhockley Apprentice
karenhockley
Posted

They may not be Celiac but they may have be gluten intolerant. I have a few friends who did the test for celiac and the test came back negative but their Doctor put them on the gluten free diet and it turns out they were gluten intolerant. If they are on the gluten free diet and their symptoms go away I'd say that's what they have. Good luck I hope they find their answer soon.

  • 3 weeks later...
KerriKnoxRN Newbie
KerriKnoxRN
Posted

It's not that your doctor is 'missing something', it's just that the tests are notoriously bad for diagnosing celiac disease. Even an intestinal biopsy has to have a high amount of damage before it can be considered positive.

So, if they don't have a high enough level of antibodies or a high enough level of intestinal damage, then they just won't be positive.

If you have a family history and they do better off of gluten, then by all means just have them stay off gluten.

There is no test for lactose intolerance either, but people who get diarrhea and horrible gas after having milk products just call themselves lactose intolerant and avoid milk. No doctor necessary.

Now, as for your family members who don't believe in it, maybe some handouts printed from the internet would be in order and/or educating your little brother so that he learns to be assertive about his diet- as most celiac kids have to be.

Good luck. I hope that this helped!

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ravenwoodglass Mentor
ravenwoodglass
Posted
It's not that your doctor is 'missing something', it's just that the tests are notoriously bad for diagnosing celiac disease. Even an intestinal biopsy has to have a high amount of damage before it can be considered positive.

So, if they don't have a high enough level of antibodies or a high enough level of intestinal damage, then they just won't be positive.

This was what my GI doctor told my DD when we were sitting in his office after her scope. He stated that she had a low positive on the blood tests and changes that looked to be celiac related changes but her villi were not YET totally destroyed. He told her that he thought she should go ahead and get on the diet and if she didn't then she could keep poisoning herself by eating it until the villi were totally destroyed. He then looked from her to me and said that of course that would mean she would then be as ill as I was. She had watched my health decline since she was a child and at that time she choose the smart route and became gluten free. Unfortunately after she entered college she was retested by a celiac speicalist who did an endo and a gene panel and was told the original diagnosis was wrong and went back to eating gluten. She is now suffering the effects of that and since she showed negative on the gene panel, (she like me doesn't have the US recognized 'celiac genes') she refuses to accept that she needs the diet. At least she had a few years of good health and hopefully someday she will wake up and get back on it.

weluvgators Explorer
weluvgators
Posted
At least she had a few years of good health and hopefully someday she will wake up and get back on it.

Hugs, Mama! I had my awakening *because* of my daughter. And now, I pray that my parents will have their own awakening. I find it difficult when seeing family members that are afflicted with symptoms that do not want to learn more (much less get tested, even worse they seem to want to *beat* the test - aka reducing gluten consumption because they realize it makes them feel SO much better and *then* going in to get the testing done). I always think, if they would just get tested . . . but the test really doesn't hold much weight with many of the people that I have met. It is fascinating how we each make such drastically different decisions based on the (relatively) same information!

I am always fascinated by the gold standard diagnosed celiacs that continue to consume gluten, and I have met a few.

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