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Worried About My Children, How To Get Doc's To Pay Attention?

Ilovetea

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Ilovetea Newbie
Ilovetea
Posted

Hello, I have concerns about my children (age 6 and 4) and possible celiacs. My concern initially was only with my son age 4, he has had gastric problems (diarrhea, constipation, pale fatty stools, lots of mucus, blood in stools.....sorry if its TMI) since he was born! he is skinny, even though he eats like a horse, he is always hungry. He has autism and limited speech so it's hard for me to know for sure if he is suffering from pain, but he is very moody and cries a lot. he has episodes of vomiting without any cause that I'm aware of, and constant colds, coughs. he has had a runny nose his whole life! He suffers episodes of fatigue and sometimes I cannot drag him from his bed of a morning. I am convinced he has some kind of allergy, but my doctor will not listen, simply saying that kids suffer from colds, gastric problems etc and he will grow out of it.

My daughter age 6 suffers from loose stools, fatigue, aching limbs, moodiness , excema, reoccuring ear infections, nausea and has problems with some of her teeth growing without enamel.

My cousins daughter aged 3 has recently been diagnosed with celiacs, and when she told me about the symptoms alarm bells starting ringing For both of my children, but I don't know how to get my doctor to take me seriously! what kind of testing should I ask for? Are they likely to do any tests based on these symptoms ?

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nvsmom Community Regular
nvsmom
Posted

Welcome to the board.

 

I agree that they have plenty of symptoms and should be tested, especially when you consider that it is in the family and that autistics often have intolerances with casein and gluten. (My own son has mild aspergers and when he is off gluten and casein, his symptoms largely disappear - although he did test negative for celiac disease.)

 

The most widely used tests are:

 

  • (Anti-Endomysial) EMA IgA
  • (Anti-Tissue Transglutaminase) tTG IgA and ttg IgG
  • (Deamidated Gliadin Peptide) DGP IgA and DGP IgG
  • Total Serum IgA (a control test)
  • (Anti-Gliadin) AGA IgA and AGA IgG (older tests)
  • endoscopic biopsy

Open Original Shared Link

 

Make sure the kids are eating gluten until their tests are complete or they may not be accurate.  Best wishes.

tarnalberry Community Regular
tarnalberry
Posted

Autistic kids who also have GI symptoms often see help from the gluten free diet. Tooth enamel defects early in life are also strongly correlated to celiac.

Your doctor is your service provider; he works for you. You need to either have a serious talk with him ("celiac is genetic and it's in our famile, the kids have symptom X, Y, and Z which are strong signals of celiac. This is a reasonable request, and you need to show me some darn good evidence that its not before I will believe you because you simply aren't speaking sense.") or hire a new provider. You are not entirely stuck with crappy care, though it may cost more to switch.

If you absolutely can't get anyone, anywhere to test them (which is ridiculously unlikely - an ND can order the tests and are generally more open to food issues), you don't need a doctors orders to try a gluten free diet. There are downsides to that, but their health is your responsibility and this isn't something you need a doctor to treat.

Ilovetea Newbie
Ilovetea
Posted
  • Author

Thanks for your replies, I've written down the tests you mentioned and I am going to call my doc's first thing. I hate going to the doctors about anything concerning my children that isn't obvious to the naked eye, because I just get treated like the 'over protective mum' , they didn't even take me seriously about my sons autism, they said he was normal and I was worried about nothing!

I'll let you know how I get on x

mushroom Proficient
mushroom
Posted

Anyone would think there was some enormous reward for receiving a celiac diagnosis -- at least judging by the way doctors attempt to prevent us from getting the diagnosis :unsure:   It really should not be this difficult to get tested :rolleyes:   But having spent five years on this board, I know what you say to be true, and it is so sad that we have to go there begging to be heard.

 

Try the more assertive approach outlined by tarnalberry -- she knows whereof she speaks -- and don't take no for an answer!

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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