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To not take Paediatrician’s advice (gluten related)

(58 Posts)
bellylaughs Wed 14-Feb-18 16:01:10

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.

BarbarianMum Wed 14-Feb-18 16:03:42

If the blood test was positive then take her off (properly off, including barley malt) before she gets any sicker.

pastabest Wed 14-Feb-18 16:11:38

The gluten intolerance may be causing the low iron levels.

If its suspected coeliac disease then it can affect the absorption of iron.

So going gluten free may solve the iron issues, and the iron issues are probably causing the shortness of breath (or what is probably actually just fatigue from low iron). If the Dr is right the iron tablets will hopefully improve the shortness of breath in the short term and the GF diet will improve everything in the long term.

CuriousaboutSamphire Wed 14-Feb-18 16:11:57

You'd be a tad odd to ignore both advice and blood test results.

Let the paed do her job! Stop second guessing with half baked ideas about it needing to be in the family! Oh and stop googling it!

FluffyWuffy100 Wed 14-Feb-18 16:16:41

t's ok, if there is no history of anything in the family she can't POSSIBLY have it.

Shen0102 Wed 14-Feb-18 16:18:39

It doesn't have to be genetic if she was eating too much of gluten foods before the intolerance can come up at any time due to the body struggling to digest excess amounts.

I've just found out this week I'm allergic to wheat, eggs and yeast. everyone in my family is shocked as no one has such allergies but I shall not ignore the results just because of that.

strawberrypenguin Wed 14-Feb-18 16:22:49

Yes you would be unreasonable. Why did you bother seeking medical advice if you’re just going to ignore it?

bellylaughs Wed 14-Feb-18 16:24:59

Thanks for the advice, it’s definitely not coeliac as she tested negative for that. I’m finding it hard to get any good info about gluten intolerance causing damage behind the scenes as it were (ie: without symptoms) I’m really open to finding out, just don’t want to rush in to gluten free diet without knowing more.

As I say it was unexpected and a short consultation last night, so I am just taking It in and finding out more about it today.
Excuse my ignorance, but is it possible that the gluten is causing damage that isn’t causing symptoms (yet?)
She’s 16 and at a difficult age to motivate to come off all her favourite foods so just trying to arm myself with the case for gluten free!

BarbarianMum Wed 14-Feb-18 16:26:43

When you say tests do you mean blood tests or has she had a gut biopsy.

woollyheart Wed 14-Feb-18 16:31:17

I know someone else who has had to cut gluten out completely because it irritated her gut lining and she couldn’t absorb iron, even though she was on iron supplements. She had absolutely no other symptoms of gluten intolerance. So you probably need to do both together even though it is not easy.

sashh Wed 14-Feb-18 16:31:24

If she is gluten intolerant (which she is) then there is no point taking the supplements because they won't be absorbed properly.

You know the paed has spent years studying and learning don't you?

Also she might not have other symptoms YET, she could develop them in the future.

bellylaughs Wed 14-Feb-18 16:34:32

They were Blood tests, no biopsy.
There were two types one for coeliac and one for gluten intolerance. I think they were called DGP igg and DGP iga. I can’t actually remember which was which and don’t have the paper in front of me now.

bellylaughs Wed 14-Feb-18 16:36:19

Woolly and Sashh thank you, that makes sense and would be a good argument to put to her to get her on side.

pastabest Wed 14-Feb-18 16:39:47

the blood tests can be negative for coeliac and someone still have coeliac.

spinn Wed 14-Feb-18 16:42:56

There are some symptoms of gluten intolerance which you don't realise you have - I took my kid off it and his bowel movements altered for the better (more regular, better formed), he had more energy even though he wasn't lethargic before, he concentrated better even though it wasn't a noticeable issue before, his behaviour was significantly better (I'd put it as typical age behaviour but the change was amazing).

Notevilstepmother Wed 14-Feb-18 16:43:26

Do what the doctor says. Plenty of gluten free options these days, will find you some links.

lborgia Wed 14-Feb-18 16:47:51

I have exactly this. I ended up needed iron infusions because gluten intolerance prevented me absorbing iron. My symptoms were not what I would've expected.

Without you seeing it, every time she eats gluten her body will be suffering from inflammation, and over time this causes all sorts of illnesses.

I find it desperately hard to stay GF, probably because there's no obvious pay off, but have to keep reminding myself of the long term repercussions.

I'm so sorry she's going through this, but there are lots of ways of framing it, and as she's still at home you can make a lot of changes to help here

My biggest change is not trying to find gf versions of favourites, just eat different things.

Good luck! Oh and yes yabu!

ShowMeTheElf Wed 14-Feb-18 16:49:11

I am intolerant. I only found out after going on a very limited diet to fix an oesophageal tear. On the advice of the doctor I added in foods one at a time. Having not eaten wheat for 6 weeks, the first time I ate a slice of toast the reaction was extreme. Your DD may well find the same: she's been feeling a bit 'off' for so long she doesn't know it, and will gradually get better once she changes her diet. Beware though: when I do get a dose of wheat the reaction is far more extreme than when I ate it most days before I knew about the imtolerance.

carefreeeee Wed 14-Feb-18 16:49:34

Blood tests aren't that reliable for dietary intolerance.

However the things could be linked as others have said.

If you have questions you would be better asking the doctor rather than googling or asking random internet strangers. There might be good reasons for what has been advised.

Also surely the hassle of a gluten free diet would be worth it if it makes her better? If she's not unwell then why go to a paediatrician?

Hogtini Wed 14-Feb-18 16:52:49

Digestive problems (such as intolerance) can affect the absorption of iron and other vitamins so definitely take the advice and see to that. I was tested for these when my blood tests revealed low iron - one of my main symptoms was breathlessness.

Notevilstepmother Wed 14-Feb-18 16:53:30

Almond based cake, not all of the biscuits for decorating are gf. www.bbc.co.uk/food/recipes/sunken_chocolate_42872

BarbarianMum Wed 14-Feb-18 16:57:43

To be fair to the OP (and I'd totally misread her dd's age so apologies OP) at 16 her daughter cannot be made to go gf if she doesn't want to. Even kids who have been gf for years sometimes rebel in their mid teens. It's hard enough to get the hang of gf eating in the first place, without simultaneously getting the hang of being more independent, away from home more at mealtimes and also not wanting to be different from their friends.

Mustang27 Wed 14-Feb-18 16:59:17

Are you being sarcastic @FluffyWuffy100

Skiiltan Wed 14-Feb-18 17:02:05

Excuse the copy & paste, but the following is from the first two paragraphs of the section on clinical features of coeliac disease in a standard pathology textbook. I've added emphasis where appropriate. (It's an American book, so please excuse spellings.)

In adults, celiac disease presents most commonly between the ages of 30 and 60. Many cases of celiac disease escape clinical attention for extended periods because of atypical presentations. Other patients may have silent celiac disease, defined as positive serology and villous atrophy without symptoms, or latent celiac disease, in which positive serology is not accompanied by villous atrophy. Celiac disease may be associated with chronic diarrhea, bloating, or chronic fatigue, but is often asymptomatic. These cases may present with anemia due to chronic iron and vitamin malabsorption. In adults, celiac disease is detected twice as frequently in women, perhaps because monthly menstrual bleeding accentuates the effects of impaired absorption.

Pediatric celiac disease, which affects males and females equally, may present with malabsorption or atypical symptoms affecting almost any organ. In those with classic symptoms, disease typically begins after introduction of gluten to the diet, between ages of 6 and 24 months, and manifests as irritability, abdominal distention, anorexia, chronic diarrhea, failure to thrive, weight loss, or muscle wasting. Children with nonclassic symptoms tend to present at older ages with complaints of abdominal pain, nausea, vomiting, bloating, or constipation. Common extraintestinal complaints include arthritis or joint pain, aphthous stomatitis, iron deficiency anemia, delayed puberty, and short stature.

("Positive serology" means the patient tests positive for tTG AgA or DGP IgG [see below]. "Villous atrophy" means the lining of the small intestine, which usually has lots of projections [villi] and indentations [crypts], is smooth."Aphthous stomatitis" refers to repeated formation of mouth ulcers.)

So although she's a little old for onset of paediatric coeliac disease, and quite young for adult onset, the presentation isn't unusual and the positive deamidated gliadin peptide (DGP) IgG test would ring alarm bells. Do you know whether she was negative for tissue transglutaminase (tTG) IgA? Does she have results for human leukocyte antigen (HLA) types?

The contribution of genes to development of coeliac disease isn't straightforward, so the lack of a known family history doesn't tell you everything as previously affected relatives might have been a few generations back.

The definitive diagnosis would possibly come from endoscopy and intestinal biopsy, although this has become less common as more reliable blood tests have become available. The NICE guidelines (https://www.nice.org.uk/guidance/ng20/chapter/Recommendations#advice-on-dietary-management) say that the diagnosis should be confirmed by a gastrointestinal specialist before implementation of a gluten-free diet, and this is also what the NHS web site says (https://www.nhs.uk/conditions/coeliac-disease/diagnosis/). Ideally you & your daughter should talk to the paediatrician a bit more about this: he/she may have a special interest in GI conditions, or might already have discussed her case with a specialist, but it's difficult to find all this out in a short out-patient clinic appointment.

Ignoring a doctor's advice isn't generally a good idea. In your position I might want to know a bit more about what the advice is based on, but that would depend on whether the doctor is routinely treating coeliac patients. I'm not a doctor, by the way. I teach medical students and come across this kind of stuff while preparing medical science teaching materials.

MrsFrTedCrilly Wed 14-Feb-18 17:11:11

@bellylaughs
As pp have mentioned the gluten in your dds diet will have been having an effect on the gut wall. Nutrients like iron are absorbed by tiny structures in the gut wall. If someone is gluten intolerant the gluten damages these nutrient absorption pathways leading to deficiencies like the iron deficiency your dd has. Iron deficiency can make you really breathless. I think the paediatric dr is being sensible and avoiding the need for an invasive biopsy “to prove” diagnosis. I’d really encourage you to have a look at coeliac society website for info.
It’s so much easier to be GF these days and products are way better too. Perhaps if your DD understands a bit more she’ll be more accepting?
Best of luck with it all and hope your dd feels better very soon

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