The Horticulturalist

I'm new to the forum but I've been watching the site for a while. I'm wondering if anyone has done the Biocard test at home before? I've just taken the test after 6 weeks of heavy gutening and its shown up negative. I decided to do it because I had a blood test done in the summer and it was again negative but with 'slight gluten' nothing significant showing and the doc just said to eat wholewheat breads good fresh fruit and veg and treated me for IBS instead! It's so frustrating so i decided to go basic gluten free for a little while which made a huge difference even without going completely guten free so I decided to make sure I ate plenty of gluten for 6 weeks then do the biocard test to then take back to my docs for a re-test. Another negative test but have a mouth full of ulcers plus a ton of other symptoms (kept a food and symptom diary the whole time)

I just wondered if anyone's done this test at home and whether they took things further....I'm not sure which way to go now... do I stop glutening myself and see how I go completely gluten free with a self diagnosis eventually or do I continue to eat gluten and go back to my docs without any evidence to persuade him to do a re-test... I really don't know what to do next...

What exactly were your slightly raised TTG levels, do you know? Did they do the EMA? You could pay for a private consultation with a gastroenterologist if you were so inclined, if you really want some answer from them that's what I would do. If they did think you needed an endoscopy then you would of course get that on the NHS.

Saw the dermatologist today, she thinks its eczema although it does look quite like DH. He has it on his inner elbows and behind knees, as well as other places but they are the worst, the DH pictures were all on the front of the knees and backs of the elbows.
And while it is itchy, it's not nearly as horrific as I've seen it described here and in other places. I also read that it's very rare in kids under 9, but I don't know how accurate that is.

I see her again in 6 weeks, if it's not responding to the eczema treatment by then she will biopsy it.

Ellie,

Sorry to hear about your doctor issues, that's very frustrating.

I am from the UK and now live in the USA, my son was recently diagnosed here with celiac and I suspect I have it too, though they messed up my testing, it's a long story. My brother is going to a 'well man' clinic in the UK this week and I have prepped him to ask for the test in addition to other bloods, we'll see if they do it or not.

I have a couple of suggestions for you,

1. See another GP, are you in a group practice? If you are you can see any GP there, try and find one you think is sympathetic. If not you can change your GP, which is a bit of a hassle, but you're getting nowhere at the moment with your current Dr.

2. Boots have an over the counter blood test called Biotech Biocard Celiac Test, which is not a replacement (I don't think) for the blood test that your GP would do, but if it gives you a positive it would help your cause in getting the Drs to take you seriously. If it's negative I would not read that as meaning you do not have celiac though.

3. This is the NICE guidlines relating to the diagnosis of Coeliac disease. http://www.nice.org....llGuideline.pdf
Page 9 has recommendations on when to offer testing, from your post it seems to me that you have "recurrent abdominal pain, cramping or distension" It also states that doctors should "Offer serological testing for coeliac disease to children and adults with....irritable bowel syndrome"

4.Your GP is wrong to say that you would be underweight with Coeliac, and he's wrong to say that you would present with diarrhea, only 30 or 40% of adults with Coeliac present with diarrhea.

5. If you have coeliac disease you will not be eligible to get gluten free foods on prescription unless you go the route of having a blood test and endoscopy for diagnosis, I know that would be a consideration for me if I lived in the UK. Don't go gluten free until you have completed all your tests though.

If I were you right now I would contact BUPA and pay to see one of their private GP's, I think you will be taken more seriously there because you are paying for the service. I know it goes against the grain to think of paying to see a GP in the UK, but I would scrape together the cash and do it. You'll be able to see someone quickly and hopefully have them do all the tests you need, I think it would be worth every penny and money well spent.

http://www.bupa.co.u...ices/private-gp

Please let us know what you decide to do and what your results are.

I called and asked if we could come in soon for the biopsy, and we will get it already Wednesday, which is a relief. It is terrible to see my child like this. His antibody blood test was negative, both genetically he is predisposed (DQ2). As soon as the biopsy is taken, we will switch to a gluten free diet, and hopefully things will get better for him soon, although a read elsewhere here that it can take long (up to six months!!) - right now that sounds unbearable. But we will take one step at the time, and right now just focus on getting the biopsy done. Thanks again Great to be here and hear from others!

Great news that it is only a few days to the endoscopy. I hope that the GI will talk to you after the scope and tell you what he thinks, if he/she does and he give you any details do let us know what he/she said. Hopefully you will have the pathology soon afterwards.

Please do let us know how your little one does on the diet!

First Post - Looking for suggestions.  My 9 yr old daughter has Celiacs, dx 5/11 with endoscope.  7/11 diagnosed with Hashimoto's disease.  Since this summer we've been on a roller coaster.  Weird urinary pain/frequency (UTI symptoms - but no UTI), sore - sore muscles, extremely tired, cold, foggy mind,weight gain, irritable, sad, and diarrhea.  gluten-free for almost 6 months.  Synthroid for 4 months and energy has improved slightly, but other symptoms still exist.  The irritability, sore muscles, and foggy mind are the most worrisome.  She was a very happy, active young lady and things have changed.  

The endocrinologist says her thyroid numbers are fine - must be depression.  The gastro says take probiotics - which helps with the diarrhea.  He also says there is still trace amounts of gluten in her body.  

?'s - 1.) We've been quite diligent with gluten-free diet.  Does it take months for it to clear one's system?  
2.) Are these common Celiac symptoms - urinary issues, sore muscles, irritability, brain fog.
3.)  When should we expect improvement?

Thanks for your advice!

Only other medical diagnosis - low vitamin D, citrus allergy

I would echo what the other have said about checking your pantry for hidden gluten. I have gotten rid of all gluten baking stuff and bake exclusively gluten free now and everyone enjoys it. My husband (a gluten eater) is making a gluten-free pizza for us all as I type, two of us are gluten-free and two are not.

I would seriously consider doing that. Toaster and bread can leave crumbs everywhere even when you've wiped up so think about that and how you store and handle it if you are continuing to have gluten bread in the house. I stopped having gluten pasta as it sticks to everything and I can't be 100% sure it's gone, we all eat the gluten-free stuff now.

Have you replaced your sieves, cutting boards, colanders and wooden spoons?

Do you eat out or at other people's homes? I would consider stopping that for several months to see if that helps, cross contamination might be an issue even when there are gluten free menus.

You need to be 100% sure that there are no cross contamination issues so you can look at other causes. Does she still eat dairy? I might consider stopping that also if you haven't already done so.

I'd also echo the advice about getting the blood tests that have been suggested. And I think your endocrinologist is talking through a hole in their head, I think you need to rule out physical causes before you label a 9 year old as being depressed with no apparent cause.

I am about to embark on the GAPS diet, I am *hoping* it will help me as I also have ongoing GI issues/exhaustion despite being gluten and dairy free for over a year. I have no idea whether it will help your daughter (or me!) but if you run out of other ideas you could take a look at it. The book that you need it called "gut and psychology syndrome", the author is Natasha Campbell Mcbride.

Lastly, not related to any of that, but as your daughter has been biopsy diagnosed in the last year you can ask for the Care Package to be delivered to her from the University of Chicago Celiac Center. We received it last week for my son (he's 7) and he *loved* getting a surprise big box in the mail addressed to him! Here's the link: http://www.curecelia...c/care-packages
They had some helpful literature in there too.