To not take Paediatrician’s advice (gluten related)

[bellylaughs]

DD16 has been diagnosed with a gluten intolerance, low iron and low Vit D after we took her for tests for shortness of breath.
This has come as a complete surprise to us. There are no allergies in family (except a bit of hay fever) and she’s never had any gastrointestinal or other symptoms.

The paediatrician put her on supplements for the iron and VitD and asked her to go gluten free for 3-6 months and monitor effects.

She has just come up with what I think is a reasonable point; if the shortness of breath goes away, how will we know if it was the iron or the Gluten free? Should we wait til after the 6 weeks of iron supplements to start gluten free if nothing has changed?

The whole thing is a bit baffling, she doesn’t have any of the other symptoms of gluten intolerance and it seems a bit extreme to go gluten free. Although on the other hand the blood test (DGp - igg) definitely came back positive for gluten intolerance.

Does anyone else have experience of anything like this? Any advice would be great.

Sorry - tTG IgA, not AgA. Nor Rayburn, neither.

This is a really interesting thread. A friend of mine has a DS 13 who has been told to go GF because he was very short for his age (with an average-height mother and taller than average father). I'm sure she told me they did all the blood tests and discovered a gluten intolerance, when all his life he'd never otherwise presented as coeliac. I think, though could be wrong, they have managed to avoid a gut biopsy.

Is the lack of growth related to the inability to absorb iron?

What makes this thread so helpful to me is understanding what consuming gluten could do in the absence of the severe coeliac symptoms I am aware of in other friends who have it. Just because you don't present "classic" coeliac symptoms doesn't mean any amount of gluten is safe, and now I completely understand why my friend is so cautious (though I always took her word for it and never questioned it!).

My goddaughter was recently diagnosed with coeliac disease.
Her symptomes were:
Not liking to be active. Fatigue. Quick exhaustion when riding her bike/climbing stairs/ PE, etc.
Beeing tired a lot. Having a vague "sickly"/pale look. Very low motivation to do anything except reading, watching tv, listening to music, drawing. She seemed kind of lethargic all the time, rarely ever excited about something.
Although she ate "normal" amounts, she was slightly underweight.
She never had gastrointestinal pain, always regular and normal bowel movements, no gas, no diarrhea.
She's been gluten free for slighthly over 3 months now and is SO MUCH BETTER. She likes physical activity now! She enjoys riding her bike. She's lively and bubbly, laughs a LOT more, has energy, get's excited over loads of stuff. She gainend some weight. She just seems like a normal and happy 10 yo now.

@Mustang27 yes

Phew

My son was diagnosed gluten intolerant in his mid thirties, after being really poorly on and off for a few years they finally pinned it down, now he is fine. I am gluten intolerant post menopause. So it can happen at any time. Now I can enjoy my pasta again. Go with everything suggested by specialist, once daughter is well again in a few months she can experiment with food.

Gluten intolerance messes up the absorption power of the gut, reducing the iron uptake and disabling the absorption of vitamins b9 and b12, which are crucial for the formation of the red blood cells.

She is anaemic because gluten intolerance prevented the uptake of correct nutrients. You can feed her all the supplements in the world, but that won't help if her gut isn't able to take it because it's dealing with inflammation due to gluten.

Gluten intolerance has been totally discredited. Coeliac is a thing. Actual allergies is a thing. Gluten intolerance is makey uppy.

@mommybunny
One of the classic signs in diagnosing young kids used to be failure to thrive ie not growing properly.
One of the landmark studies into coeliac disease was carried out in the west of Ireland where there was a higher incidence than expected although the reckoned that diagnosis levels were low because people weren’t being screened in the first place iyswim.
Diagnosis and screening has moved on a bit since I worked in the area.
@bellylaughs a dietetic referral would be useful for your Dd, ask GP or consultant for referral

It sounds entirely possible that DD has coeliac. Iron deficiency, vit D deficiency and other deficiencies are a feature of it due to malabsorption. As others have said she could well take the supplements but have limited success upping her levels.

Often people think someone with coeliac is either throwing up or permanent lyrics on the loo with the runs and crippling stomach pain if they ingest the merest spec of gluten. Some people do suffer in this way but similarly many have less obvious symptoms. Mine are low ferritin and vit D, poo that is huge, sticky and unflushsable (sorry TMI Know), constipation, fatigue and as a child I was exhausted, had stomach pain after eating (I had to lie on my front for an hour or so after meals). I was (and still am, very small). Either coeliac wasn’t known about 50 years or so ago or my parents just didn’t bother getting advice (very likely ).

I really recommend that DD follows the advice of the paed. It can be a slow process to build up vit levels orally sometimes but if she does happen to be coeliac then it will be far far less of a struggle to do so. Sorry she’s going through this. It’s a rubbish age to have to deal with a major lifestyle change.

Permanent lyrics!! I mean permanently sitting on the loo! Predictive text going off piste there.

I would be tempted to see if they will do a biopsy before you come off the gluten for a bit more confirmation. My dd is coeliac , diagnosed at 11 , and gf food has really improved in the last few years , she is 18 now and we have no problems with eating out etc .

Interestingly it's the fast food type places that are really behind on offering gluten free options, the independents are usually pretty good.

I'm always really surprised that someone like McDonald's still hasn't started offering proper GF options.

My DD was told to cut out gluten for 3 months after a test (it was done as part of a battery of tests for something else.

She had no symptoms that screamed that this was the problem - and this is a child with very regular medical input for other things. We're now 6 months in and she's got far more energy (didn't realise she was short of it as it was just 'normal' for her), her migraines (which were attributed to something else) have stopped, she no longer needs iron supplements and her periods are better (more regular and less heavy). She also says she feels happier which they can't say if the gluten affected her moods or if the above things being better have affected her moods.

If she cuts gluten out and it does nothing to help then in 3-6 months she can bring it back in. She'll have lost nothing. If it makes her feel better then the gains could be easily worth it.

Interesting crisps cause I was at a lecture given by one of the UKs top researchers into coeliacs and gluten intolerance a few months ago ans he said exactly the opposite.

Thanks for all the interesting replies. Amazing how it affects people in different ways and the effects of going GF.

My only question now is do I ask for her to have further testing for Coeliac before going gluten free? I guess I will ask the Paediatrician what he thinks. Don’t want to miss the window for coeliac testing by cutting out gluten if there ends up being a need for the test IYSWIM.

I had no idea that the absorption of nutrients could be adversely affected by gluten, now the Paediatrician’s advice makes much more sense. Thank you all!

If possible it would be best to have any tests before she goes gf. This way she will have to go gf for 3-6 months to see if she improves. Then if they decide to do further tests she will have to go back on gluten and if the conclusion after that is that she can’t tolerate gluten she’s going to have to go gf a second time. Seems a bit of a convoluted way of Going about things. While her system has plenty of gluten in now is the optimum time to do all the tests they need to do to establish if there is an issue for her around gluten.

While I'm itching to show Crisp lots of links I'll just say to the op, something I've only just discovered is that there are other substances that are often an issue, as well as gluten. I had terrible trouble because everything said that oats can be gluten free, but they gave me a lot of symptoms. Turns out they contain something called avenin, and there's something in barley too. Wasted an awful lot of breads and cereals with that one!.

You've either misinterpreted or been misinformed. There are two antibody tests for coeliac disease, not one for coeliac and one for intolerance. A raised Gliadin (DGP) IgG is indicative of coeliac even if the TTG IgA is negative. She needs a biopsy to confirm. Going gluten free is a cheap, poor quality way of confirming. She could have coeliac disease so needs to be gluten free after proper confirmation. How high were the Gliadin antibodies?

@bellylaughs

Also, what was her total IgA? The TTG IgA can be falsely negative if there is IgA deficiency.

To reiterate your DD's bloods indicate coeliac disease not gluten intolerance. She needs a biopsy to be sure.

What skiilset said. (If I got the name right). In my view a restriction diet, cutting out stuff that is allergenic and then reintroducing one at a time, is the gold standard way of establishing what you can and cannot eat. Blood tests are skewed by your dietary patterns however the "pass mark" for coeliac disease is quite high so it's possible to have inflammation and other allergy related responses without passing. Also the coeliac test is for a very specific part of the gliadin protein and it might be another, related, protein causing the symptoms as iborgia says.

Also coeliac disease is autoimmune but you could, like me, have an immune response to wheat and other grains without testing positive for coeliac. Try a GF diet and if there is an improvement your daughter won't want to go back. If not then there isn't an issue. Ideally it should be a blind test with gluten reintroduced after a few months off. That way you'll know whether reaction is real. (In my case I got properly glistened and couldn't go to work for two weeks).

Oh and the biopsy is no fun. No fun at all. The purge beforehand is less than pleasurable.

Dietary exclusion and reintroduction is relevant to intolerance, but a biopsy is gold standard for diagnosis of coeliac disease. You don't need to purge prior to an upper GI endoscopy. Just be nil by mouth. A gluten free diet as an alternative to biopsy when there's raised antibodies and diagnostic uncertainty is the cheap and nasty way of helping diagnosis in a setting of limited resources. But my personal view is that coeliac disease is a serious autoimmune condition with lifelong health implications and as such should be diagnosed properly.

And to clarify, gluten intolerance does not lead to failure of absorption of iron and other vitamins like Vit D like Chocolatesprinkledcrumpet said, it's villous atrophy from autoimmune damage.

...that causes malabsorption.

Isn't that the same thing? I imagined the reaction to gluten is what flattened the villi iyswim.. not arguing, actually want to know!

I've been a bit baffled but def have iron malabsorption, and villi def looked ok during biopsy..