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While Tests Say No I Think Ds Has Celiac.

gypsyrosenfmommy

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gypsyrosenfmommy Newbie
gypsyrosenfmommy
Posted

Last year DS wsa 2 years old. He was tested for celiac (it was a basic test and did not do the DNA test) and it came back negative. He was tested by his Pedi. I honestly still feel he has it. (or that and something else is going on) He bloats SOOO bad, has gritty poop, he is VERY irritable (the slightest thing bothers him), his skin is very dry and he gets chicken skin. He has had cases of dihareha so bad that when he poops it leaves his diaper and covers the floor (this is uncommon but has happend a few times). He gets VERY gassy and lets out toots so strong you can feel the floor shake a tinny bit, he has a chronic runny nose (started at a week old), dark circles around his eyes (at a very young age before age 1 he got these) to the point he looks ill often. I am just at a loss. His test was a blood test. I am TRYING to convince my husband to remove ALL gluten from the house. (we have 5 kids total so this will prevent any chance of him"accidently" getting some). I also have bad bowel problems, and dark circles. 

 

 

(when he bloats his pants will NOT fit!)

 

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kareng Grand Master
kareng
Posted

I would insist on seeing what tests were run.  Make sure they really ran Celiac tests.  Also, it can be hard to get a positive test on a child that young.  You might want to skip the ped and go to a pediatric GI doctor. Something isn't right.

 

 

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gypsyrosenfmommy Newbie
gypsyrosenfmommy
Posted
  • Author

I agree 100% that something just is not right. He also has Neurofibromatosis type 1 and I know it's slightly more common in people with it than a "normal" person. I feel like ripping my hair out sometimes. All the Drs i have spoken to besides his old alergist seems to think I am over dramatizing it because he is growing right. 

I would insist on seeing what tests were run.  Make sure they really ran Celiac tests.  Also, it can be hard to get a positive test on a child that young.  You might want to skip the ped and go to a pediatric GI doctor. Something isn't right.

 

 

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kareng Grand Master
kareng
Posted

Maybe they need to check and see if any tumors are growing in his GI tract or impeding his GI tract?  It looks like that could happen but I don't know much about NF.

gypsyrosenfmommy Newbie
gypsyrosenfmommy
Posted
  • Author

The problem is getting a referance to a pedi GI. My old pedi refused to do it. (So glad we moved!). Insurance wont pay and the pedi GI if there is no referral. 

Maybe they need to check and see if any tumors are growing in his GI tract or impeding his GI tract?  It looks like that could happen but I don't know much about NF.

kareng Grand Master
kareng
Posted

The problem is getting a referance to a pedi GI. My old pedi refused to do it. (So glad we moved!). Insurance wont pay and the pedi GI if there is no referral. 

 

 

You must have a doctor now?  I would get one, if my child had such a serious chronic illness.  Does a neurologist follow NF?  Its been a while and I don't remember.

gypsyrosenfmommy Newbie
gypsyrosenfmommy
Posted
  • Author

We just moved. The soonest they can get a new patient in is 2 months -_- . Yes a nero follows NF. He has already had his yearly exame 3 months ago. 

You must have a doctor now?  I would get one, if my child had such a serious chronic illness.  Does a neurologist follow NF?  Its been a while and I don't remember.

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sweetsailing Apprentice
sweetsailing
Posted

Don't wait for an appointment.  Call the office and explain what you want and would like a referral to the GI.  They may just provide a referral based on a phone call.  Can't hurt to try.

Gemini Experienced
Gemini
Posted

If that beautiful, poor little boy doesn't have Celiac, I'll eat my computer screen!  He looks like the poster child for it...WTF don't the doctors see? OMG...start getting tough and nasty with these docs so he can get tested and put on a gluten-free diet....PRONTO!   :(

Stardustine Newbie
Stardustine
Posted

That belly is the typical celiac belly if I've ever seen one … and I saw many thanks to Dr. Google (not an educated opinion here, just an opinion).  My daughter also has an enlarged belly, but nowhere near that of your son's.  If she looked like that, I'd camp out in front of the GI specialist's office - I'd pull a Karate Kid and sit there until they let me in.  I really hope you get answers ASAP.  I'm also starting to get a little rough with my dear doctors as we need answers and solutions - not just pat on the back and 'everything will be fine' sort of attitude.  Good luck!!! Keeping my fingers crossed for you and please UPDATE US when you know more.

gypsyrosenfmommy Newbie
gypsyrosenfmommy
Posted
  • Author

I 

 

That belly is the typical celiac belly if I've ever seen one … and I saw many thanks to Dr. Google (not an educated opinion here, just an opinion).  My daughter also has an enlarged belly, but nowhere near that of your son's.  If she looked like that, I'd camp out in front of the GI specialist's office - I'd pull a Karate Kid and sit there until they let me in.  I really hope you get answers ASAP.  I'm also starting to get a little rough with my dear doctors as we need answers and solutions - not just pat on the back and 'everything will be fine' sort of attitude.  Good luck!!! Keeping my fingers crossed for you and please UPDATE US when you know more.

 

 

If that beautiful, poor little boy doesn't have Celiac, I'll eat my computer screen!  He looks like the poster child for it...WTF don't the doctors see? OMG...start getting tough and nasty with these docs so he can get tested and put on a gluten-free diet....PRONTO!   :(

:) He is my handsome little man. He is hard headed just like me and looks just like his father. I agree he looks like a poster child for the illness. His belly gets even worse than that. There are times at night he just cries and cries though not so much anymore. When he does I give him a warm bath and then lay in bed with him rubbing his belly. I found it helps get the gas out. This is a better picture of him. It took me a YEAR to get him diagnosed with NF AFTER I had already been diagnosed. The doctors where i just moved from NEVER told me even why my oldest started having seizures out of the blue! I am hoping now that I am close to a REALY good hospital I can start getting answers. 

 

 

Clean him (His name is Arlo)

10392453_10204208505958438_7114630975732

 

and messy Arlo LOL (he had just eaten dinner at his grandmothers)

10492243_10204208453997139_4463096075054

 

Don't wait for an appointment.  Call the office and explain what you want and would like a referral to the GI.  They may just provide a referral based on a phone call.  Can't hurt to try.

They wont referell until they see him :( I have been fighting for a long time to figure out why he bloats so bad. 

If that beautiful, poor little boy doesn't have Celiac, I'll eat my computer screen!  He looks like the poster child for it...WTF don't the doctors see? OMG...start getting tough and nasty with these docs so he can get tested and put on a gluten-free diet....PRONTO!   :(

Gemini Experienced
Gemini
Posted

He's adorable! The bath thing is a good idea.......being in water reduces the pressure inside and helps to pass any gas. But he needs to see a Celiac specialist and even if they say no, no after testing, try the diet anyway. Testing in young children can be unreliable and that is a known fact. I bet he improves on the gluten-free diet and his belly will go back to normal size. I know........I looked like that too! The bloat queen......

Good luck!

nvsmom Community Regular
nvsmom
Posted

Oh, poor little cutie. :(  That bloating can hurt. I remember standing on my head or hanging off the edge of my bed (head down) trying to get relief.... I agree that he is the poster child for celiac belly.

 

If you have to wait a ridiculously long time to see the doctor, you could always go gluten-free  now.  Please know that it will make testing harder in the future though as he will have to resume eating gluten for 8-12 weeks prior to testing, but if it is going to take months and months to get in, it could be something to consider.

 

My kids tested negative in the usual celiac test too (tTG IgA) but I suspected celiac disease in 2 of them so made them gluten-free anyways.  They had bigger bellies before too (not as bad as your little guy), as well as some other issues, and it basically all cleared up when they went gluten-free.  They have no diagnosis but they feel better, and that's the main thing for us.

 

BTW, my 6 year old now has such a flat belly that we can see the beginnings of a six pack.  ;)  Best wishes.

gypsyrosenfmommy Newbie
gypsyrosenfmommy
Posted
  • Author

Oh, poor little cutie. :(  That bloating can hurt. I remember standing on my head or hanging off the edge of my bed (head down) trying to get relief.... I agree that he is the poster child for celiac belly.

 

If you have to wait a ridiculously long time to see the doctor, you could always go gluten-free  now.  Please know that it will make testing harder in the future though as he will have to resume eating gluten for 8-12 weeks prior to testing, but if it is going to take months and months to get in, it could be something to consider.

 

My kids tested negative in the usual celiac test too (tTG IgA) but I suspected celiac disease in 2 of them so made them gluten-free anyways.  They had bigger bellies before too (not as bad as your little guy), as well as some other issues, and it basically all cleared up when they went gluten-free.  They have no diagnosis but they feel better, and that's the main thing for us.

 

BTW, my 6 year old now has such a flat belly that we can see the beginnings of a six pack.   ;)  Best wishes.

 

 

He's adorable! The bath thing is a good idea.......being in water reduces the pressure inside and helps to pass any gas. But he needs to see a Celiac specialist and even if they say no, no after testing, try the diet anyway. Testing in young children can be unreliable and that is a known fact. I bet he improves on the gluten-free diet and his belly will go back to normal size. I know........I looked like that too! The bloat queen......

Good luck!

 

 

That belly is the typical celiac belly if I've ever seen one … and I saw many thanks to Dr. Google (not an educated opinion here, just an opinion).  My daughter also has an enlarged belly, but nowhere near that of your son's.  If she looked like that, I'd camp out in front of the GI specialist's office - I'd pull a Karate Kid and sit there until they let me in.  I really hope you get answers ASAP.  I'm also starting to get a little rough with my dear doctors as we need answers and solutions - not just pat on the back and 'everything will be fine' sort of attitude.  Good luck!!! Keeping my fingers crossed for you and please UPDATE US when you know more.

 

 

If that beautiful, poor little boy doesn't have Celiac, I'll eat my computer screen!  He looks like the poster child for it...WTF don't the doctors see? OMG...start getting tough and nasty with these docs so he can get tested and put on a gluten-free diet....PRONTO!   :(

 

 

Don't wait for an appointment.  Call the office and explain what you want and would like a referral to the GI.  They may just provide a referral based on a phone call.  Can't hurt to try.

 

 

You must have a doctor now?  I would get one, if my child had such a serious chronic illness.  Does a neurologist follow NF?  Its been a while and I don't remember.

 

 

 

 

 

So a bit of an update for everyone. I took DS off gluten since I posted this. His belly has gone down DRAMATICLY and his skin is clearing  up some. He still bloats like this down from time to time and he still has a SMALL constantly bloated belly but NOTHING like before. I know lactose intolerence and Celiac can be an issue so I am going to try and keep him on almond products and coconut products.  I will try and get a picture up soon of how his belly is improving. Still not great but better. 

gypsyrosenfmommy Newbie
gypsyrosenfmommy
Posted
  • Author

6718c7fb-bf70-4c0d-b42d-468d04b34320_zps

Cara in Boston Enthusiast
Cara in Boston
Posted

What does "growing right" mean?  Obviously there is something wrong and he needs to see a GI specialist.  My son was diagnosed at age 6 and was above-average for height and average weight.  He was "growing right."  Make sure you got the complete blood panel.  My son was negative on three of the five tests . . . if they don't give them all, you could miss something important.

 

It will be difficult/impossible to get accurate tests if you change his diet before testing is complete.  Our process took over 4 months (from first blood test to endoscopy) and it was so hard to continue to feed him gluten when I knew it was causing his problems.  I am thankful, however, that we have a clear diagnosis.  The diet change is permanent and you don't want to have any doubts later.

beth01 Enthusiast
beth01
Posted

If you need a referral to GI go to the Emergency room.  Explain your situation, show them the evidence and ask them to refer you to GI.  If you have no established doctor in your area they really can't make you wait two months to see the Neuro when he is that uncomfortable.  Be persistent.  I was having problems being admitted with extreme nausea and vomiting and unrelenting stomach pain, I flat out told the doctor I would leave the ER and come right back through the door and be reregistered, I would repeat until they admitted me and found out what was wrong.  They kept trying to tell me it was the celiac.  I had my appendix out two days later that had been inflamed for months ( they knew it was inflamed) and come to find out it was impacted with stool. 

africanqueen99 Contributor
africanqueen99
Posted

My youngest also had that belly - she looked like a kid in a Sally Struther's commercial. :(  All belly and little twig limbs.  I still remember those screams all night long.  That was a really rough year.  But, like Cara, I waited out everything to get a true DX.  Please reconsider altering his diet until he has a firm DX.  It will makes things so much easier.

 

FWIW, my middle and my youngest both have/had the dark eye circles.  The youngest from Celiac and they went away when the gluten finally got out of her system.  The middle from allergies.  It's clear as a bell when his allergies are bothering him based on how dark the circles are.  Has the allergist mentioned anything about that?

greenbeanie Enthusiast
greenbeanie
Posted

If you have a sympathetic allergist, you might try getting the allergist to push the primary care doctor's office for a GI referral (without waiting for the appointment). A two-minute phone call from the allergist to the other doctor might accomplish what patients/parents themselves cannot.

We had a similar situation with my daughter - her old PCP kept insisting that nothing was wrong because she was tall for her age, and once we switched doctors we had to wait months to see a new PCP, and then we did get a GI referral but we were going to have to wait two more months to get in there. Fortunately, I did convince the new PCP to run both DGP tests as well as the tTG, and when they all came back positive the GI moved us up to an urgent appointment a few days later. She was in for an endoscopy a few days after that and had a firm diagnosis within two weeks of seeing the new PCP. Though it was very hard to keep feeding her gluten in the months waiting for the first appointment, when I was almost certain it was making her sick, I am so glad we did not change her diet until testing was complete. As difficult as those months were, it would have been much worse to put her back on gluten to do a gluten challenge after she was feeling better. And the official diagnosis has helped us immensely in terms of getting family, friends, and daycare/school to take it seriously and be careful about cross-contamination.

beebs Enthusiast
beebs
Posted

Wow, he had a very bloated tummy didn't he. Sounds so much like what my son went/is going through - over the last 4 years. 

SMRI Collaborator
SMRI
Posted

Another suggestion, if possible, when open enrollment comes around for your insurance plan, if you have a PPO option vs an HMO option, most PPO's do not require referrals.  It might be worth it to get him a private plan through one of the health exchanges if you don't have a PPO option through work.

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