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mayakeller

Gluten Allergy? Celiac Diesease? Or Just Allergies?

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hello everyone - i am new here - and looking for some assistance and opinions.......

my ds has had a ton of issues and they have worsened a great deal as of recent.......

since he was small he has had a rash common in people with allergies called keratosis pilaris otherwise known as chicken skin,,,,little red bumps all over his upper arm and thighs - our first indication he may have allergies.......

rashes here and there - not a ton - but def enough i wouldn't consider it normal - unknown causes

he has always vomited very easily and one dr told us he just had an overactive gag reflex - but has always just vomited for no reason - often not even ill.....but intermittently - i brought him to see a paed because of teh above when he was younger and he said he was fine :(

also - his bowel movements are always soft 90% of the time - odd colours and often very nasty odours.........rarely do we get firm formed stools

also - he is always sick - since around 12 months of age - one illness after another it seems - virus' that turn into bacterial infections - he has had pneumonia twice.....since last september he has been sick every month until now almost all of them requiring antibiotics.......and today he woke with yet another fever and "bobo's on his neck" - brought him to dr and his lymph nodes are quite swollen - so he has yet another infection.....or virus.....who cares anymore!!!!!

he has also never been a good sleeper - but as of recent his insomnia has reached new levels - awake on and off ALL night - sleep walking sleep talking grinding teeth nightmares night terrors.....we have spells though it seems - the recent bad spell was the worst and prompted us to go to a sleep disorders clinic......the dr there took a good history and mentioned it sounded almost as though he had a gluten allergy - similar to celiac disease.......

they did a sleep study to get a baseline to rule out sleep apnea and whether or not tonsils and adenoids were causing problems.......i am on a cancellation list to get results from it any time soon.......otherwise i need to wait until march

i was referred to an allergist for testing last summer and the appointment was made for this march (rediculous i know) called and got them to bump me up a month and put me on a cancellation list there as well......they informed me though they do not test for gluten allergies there..........

i was also today referred on urgent status to see a paediatrician who will hopefully see us soon and send us for bloodwork etc.,

i have done some readng and as you can see from above my ds has allot of the symptoms of celiac or gluten intolerance........one symptom he does have i never thought might be connected is discoloured tooth enamel......brought him to dentist as i was mortified his teeth were yellow in spots since we brush every night - and he told me it was discoloured enamel and nothing to worry about.......

my husband has allergies - environmentall and foods etc.,

i have allergic rhinitus and have issues with milk - never was tested just stopped drinking it - both my sisters as well........

what are your thoughts?

anything i should really push for or discuss with the paediatrician and allergist when i see them??

i need this to be over with - and soon......we are really at our wits end with things and we also have a newborn in the house so things are tiring as it is..........

thanks in advance

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[My best guess would be that you are dealing with a problem that involves multiple food sensitivities. In the least, test for food allergies and then get the bloodwork for Celiac Disease done. The allergist may not be able to test for gluten allergies....but they can test for wheat, rye, oats, etc..

Once the results are in, follow up with an elimination diet. That is the most reliable form of "testing" there is.

There are several moms that I know whose children tested negative for all of these things and yet they found tremendous relief with an elimination diet. In most cases, it not only helped the older child, but it helped immensely with younger siblings who showed other manifestations of the problem as well. And in other cases, it helped resolve health issues the parents were having as well. You'd be surprised at how varied the reactions can be.

Good luck with your ds. I'm sure that with a bit of persistance and some faith in yourself and your observations that you will find some answers.


Vicky

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We are one of those moms!!! Our youngest and sickest child is according to the test results for everything perfectly normal and healthly. Other than a mild lactase deficeincy no reason for her failure to thrive and grow and bms several times a day. NO REASON!!!

3 weeks gluten free and a whole host of issues deemed "normal" by the ped are disappearing. That chicken skin on the oldest is slowly getting better. Most days his skin is soft feeling though bumpy instead of feeling like rough sandpaper that can snag you. My joint pain is gone and so is that hang over feeling every morning. The middle child looks rested and well instead of pale and fatigued. If he sat down he went to sleep. Now he at least stays awake in the car (he's 7 !!!!) and doesn't "wilt" during the day. THe baby is much better though still has a long way to go. Our stomachs cleared up enough to determine that we have an additional problem with dairy and we are having to eliminate that as well. Whether it is intolerance or an allergy we'll figure out later. RIght now I want 3 kids who have regular poops and aren't running to the bathroom!! I no longer care as to the whys. No one can give me the answer to the whys.

we are being forced to self diagnosis. The gluten-free/CF diet seems to be the answer and so far is working (we haven't quit gotten all the dairy out but I'm getting it there). The improvements are beginning to show up in ways we never even knew was a problem until they went away.

Keep pressing forward.

Stacie

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Very few medical doctors are testing IgG reactions. Most of what you are describing are gut issues and IgG would be were to go looking.

An Allergist is going to run IgE test, the results come back on a scale of anaphylaxis. Given your dh has allergies to foods, your child very well might come positive on something.

You should call and ask specifics before deciding to wait it out. I have read of doctors doing IgG test, but I have not met one.

You should know that tests for allergies and Celiac tests are not all that accurate and less accurate in children under age 4.

You definitely need answers. But I don't know if you are going to get firm concrete answers ever. The medical doctors could say nothing is wrong with him and then you are left to either try alternatives for testing or try an elimination diet and just go with your gut.

Alternatives ---

Entrolab - Celiac and Gluten Sensitivity testing

Immunolab - food sensitivity testing

Applied Kinesiology - chiropractic method of determining food intolerances and environmental sensitivities and body areas affected. And while it sounds hoaky, I had a chiropractor properly identify my thyroid dysfunction and hormone imbalance without taking a history and without knowing I had labs to prove what he did with his muscle testing. It's a long story.

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"since he was small he has had a rash common in people with allergies called keratosis pilaris otherwise known as chicken skin,,,,little red bumps all over his upper arm and thighs"

My daughter and I both have this... its a separate and completely different genetic thing that is VERY common in kids. Most will grow out of it some wont. Basically our bodys just produce too much Keratin and it comes out through the skin. It is not in any way related to allergies. The way I control it with my daughter is to not wash her every night and keep her well moisturized. The best soap I have found that keeps the bumps down is Crabtree and Evelyn Sweet Almond oil bar soap (that is if you have not nut issues) California baby and coconut oil work well too.

I know its unrelated because my daughter has been gluten free for well over a year now and she still has it, it gets worse in the winter when her skin is dry.

I hope things get sorted out soon, I remember when I "didn't know" what was going on and it was a rough time. I say follow your heart and do what it says... when it says you need to push and issues with your Dr. do! I did exactly that and it seemed to work!

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