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The link you provided is for steroidal treatment for refractory celiac disease. I thought the context of our discussion was steroid use for asthma and its possible effect on a Celiac panel.
For refractory celiac disease, the treatment would be oral (systemic). Steroids for asthma and refractory celiac disease are not delivered by the same route, which can make a difference. One of the rationales for using inhaled corticosteroids is to minimize or even avoid systemic effects.
The most commonly listed side effects of inhaled CS are: oral thrush; dysphonia; and hoarse voice. To minimize these effects patients are taught to rinse the mouth. Even better is to use a spacer - there's less chance of systemic infiltration. However, as discussed, it is possible a systemic reaction and side effects can occur. But in general if we are talking about steroid use, the route (as well as dosage and how long it's been used) does matter.
That's a good point. Though the patient is supposed to be on the lowest dose possible of inhaled steroids and although steroid use for asthma is technically a local medication, it's possible for a systemic reaction to occur and definitely worth checking out. Also the association between asthma and celiac disease is supposedly strong, and something you've no doubt thought of by now. Once all this is settled and if your child does end up on the gluten-free diet, it will be interesting to hear what happens with his asthma. And finally not to get too inside baseball, if you do end up going with a small intestine biopsy, it may be worth checking with the medical team to see what his immune status is, as I've read that immunocompromised individuals may need prophylactic antibiotics before invasive procedures.
Why not just get them to run a CBC, metabolic and lipid panels if your insurance covers it? If doing testing for Celiac, I can see that the other three panels are justified. Usually my doc runs those as standard anyway with my physical, ok I'm older but still. If you get all four panels run (including the Celiac one) you should be covered for things like calcium and iron, two other common deficiencies with celiac disease. The list for manifestations of celiac disease is long and does include things like low cholesterol.
(That is a link to what to get tested for. Link says it's for adults)
Running all those panels/labs just provides good clues as to what's going on, and gives you much more to work with IMO.
The whole discussion about Fasano's criteria is maybe not something I want to wade into partly because I thought you said your son is symptom free. Also as you noted, there is of course silent Celiac and the whole concept of the Celiac iceberg, which Fasano has talked a lot about as well, if I recall correctly.
The leg pain - one thing I was wondering about was B12 deficiency, but as you say it could be D.
As you no doubt know, abrupt discontinuation of steroids can lead to adrenal insufficiency, but I've always read that regular use of inhaled steroids should not lead to growth insufficiency, but maybe the idea was to just encourage people to take them regularly, since preventing an asthma episode is easier than dealing with one once it's started. Cortisol breaks down muscle tissue and bruises and striae may develop. There are a host of other side effects, but docs have gotten much better at knowing the right dosage to take.*
*Too much cortisol breaks down muscle tissue I should have said!
I just found this link:
"Inhaled corticosteroids may suppress growth in the first year of treatment in children with asthma, but lower doses may minimize the effects, according to findings of 2 systematic reviews published online July 17 in the Cochrane Library."
I like medscape a lot.
Added: Seems the fat soluble vitamins are important ones to get tested. Here's an article with a few comments on what vit and minerals to get tested for:
Your doc and nurse should be curious about that leg pain.
I've read about associations between asthma (usually severe) and growth issues in children, but I don't know enough to say why this could be, other than any time a major organ is involved there are often growth issues, and then the steroid use, but inhaled corticosteroids are usually not a factor in growth, and after systemic corticosteroid use ends, growth resumes. Otherwise, as you say, both of your child's parents have short stature, so there may be zero cause for concern. I agree with the cyclinglady, that before diagnostic blood tests, you do want your child to be consuming gluten for sure. Otherwise, I have a very good book that says it may be possible to do an ultrasound of the small intestine wall. The book is Recognizing Celiac Disease: Signs, Symptoms, Associated Disorders and Complications by Celo J. Libonati with a foreward by David M. Capuzzi. If you are going to a nice Celiac center (lucky you! I hope you learn a lot) you may just ask them about the small intestine ultrasound.
Please keep us informed, if you wish, of what happens.
You didn't say what age your child was. I understand your fears that the docs will just want to do the small intestine biopsy. That is probably true. However, if he hasn't grown in two years, is it possible that - if he has celiac disease - he's had it for a while now? Again, because we don't know the age, I can't tell the normal growth rate of children that age. There are ages when growth rate is slow (for everyone, on average).
So it looks like he tested positive for one gene, but not both, right? According to a video I watched By Dr Hasan Hasan from 2011, it seems both must be present for a positive diagnosis ("the deamidated gliadin has high affinity to HLA2 and HL8 which you have to have if you have celiac disease"), but our knowledge is expanding or being corrected all the time. And I may be wrong. Please double check.
The first one. The reason this test is done is to see the total levels because some people are IGA deficient which can be cause for a false negative result. People with celiac disease suffer from low total levels more frequently than the general population.
tTG-IgG (transglutaminase immunoglobulin A), the second one - this enzyme deamidates gliadin which is a broken down component of gluten. In reaction to the presence of TTG, the IGA is produced. Raised IGA indicates short term immune response - 2-4 weeks -to presence of d. My notes say that this is not a 100% specific, that there are other causes of a positive TTG IGA test such as diabetes, heart failure, Crohn's and others.
This test measures long term immune response to gluten (3-6 months sometimes up to a year preceding the test). Why this was negative if the TTG IGA was positive is not something I can explain easily or at all.
The last two tests basically are looking for reaction to gliadin. Maybe you know all this.
They didn't do EMA as you said, wihc is specific (>95% and >90% sensitive). According to my notes, "EMA antibodies correlate to degree of villous atropy." One thing you could do is call them back up and be firm and request the EMA.
People are going to tell you different things. I myself don't have much experience dealing with children, but it's a critical time obviously. Off the top of my head, the only thing that occurred to me is if you don't want to do the biopsy, then you could just start now to eliminate gluten and see how that goes. There are many necessary vitamins and minerals added to bread products with gluten, so just be aware of all that if you do go gluten-free.
Thanks. I try to avoid social media (I think!) so unless I get really desperate, I don't think I'll join. But I appreciate knowing that.
What I've thought about doing is using evaporated milk (instead of sweetened condensed milk) and a tiny amount of sugar. I can add a likewise reduced amount of sugar to the heavy cream for the topping (whipped). I'm googgling the two types of milk now, and they may actually not be interchangeable, so I'll need to read more. The final trick after that will be the crust. There are plenty of gluten-free crusts but as most of us know, for bread products, sugar is often increased to disguise the fact that it doesn't taste as good (in my opinion!).
I was going to post what I found on Omissions web site about their mission being to brew a gluten-free beer and mission accomplished etc etc...but see that others have already done so.
What I'm now going to say is different but probably even more likely to cause conflict. Please just read the whole thing first.
An acquaintance was first dx 18 years ago with celiac disease. His case was much more severe, wasting, than mine, and practically the instant he went gluten-free, his symptoms went away. But then a few years ago, it was a hot day and someone offered him a craft beer and he drank it. Nothing he said. No reaction. So, he started drinking nice craft beers. Not gluten-free-marketed beers. But craft beers. But, he wanted to see if any markers showed up. (Again, please read the whole thing.) So he stopped. He got the gliadin antibody tests - not diagnostic. He was clear (AGAIN. Please keep reading, I know I know.) So he did the craft beer challenge and started drinking it again and a few months later got the ABA IgA or IgG test. Nothing. He was clear. (....hope you are reading and not jumping to comment!)
So now, my commentary. Setting aside for the moment that tests available for gluten in foodstuffs are bad, we must I guess, test our bodies. Gliadin is a broken down component of wheat and would not therefore measure hordein, the broken down component of barley. So, to my way of thinking, the test he had done was not really useful, right? My understanding is that aside from the ABA IgG and ABA IgA tests, there are three other components of the Celiac panel, but none of them test for anything but gliadin or reaction to gliadin. Not hordein. Not seculin (?).
Moving on, I got on the Internet and have discovered that there are indeed some beers without being marketed as gluten-free that are below 20PPM in gluten. I had no idea! I do not know about craft beers.
My symptoms are milder than my acquaintance's, and yet I generally do not like to gamble with anything that might contain gluten, because I am aware of the Celiac iceberg. But sometimes it is tempting. Is there any way to have an open discussion on this without going automatically to "do not drink any beer period?"