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.

My 7yr old was diagnosed with celiac via an endoscopy and +ve bloods back in October, he has been gluten free since then and I'm fairly sure that there are no cross contamination issues for him as I had been gluten free for a year prior to diagnosis.

So a few days ago he complained of being itchy, his skin on his trunk was dry and he was scratching a lot and even woke during the night. He has always been prone to dry skin and sensitive skin but that's about it.

last night I noticed that he had a rash on his inner elbows, the backs of his knees and all over his trunk and buttocks. It is made up of pinprick sized little spots with teeny tiny scabs on some of them and others look like little blisters, they are very small.

I can't get a dermatologist appt for several weeks and I think it will be gone by then, how important is it that we get a diagnosis for this do you think? I mean, he's already gluten free so I was a bit surprised to see this appear, however it's only been 8 weeks and it's entirely possible that he has had this in the past but I just never noticed.

I know the dermatologist personally, (from church) but we are not close or anything, I would need to be convinced that it was important for him to be seen soon in order to call her at home and see if she could squeeze him in. What do you all think?

Also, how exactly is it diagnosed, can she test for it in her office or does it need to be sent so a lab?

Edit: I have a photo of his arm that shows the rash, I don't know if I can post it here, if anyone can help with that I'll gladly post it.

Thanks for your help.

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. Open Original Shared Link

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.

Open Original Shared Link

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

I live in a small town and our local Walmart sadly stopped carrying Earth Balance, the only other supermarket that has is it is a small Kroger and it cost almost $5 per tub, so I won't buy it at that price.

I noticed some dairy free Bestlife sticks and spread in Walmart the last time I was in and emailed the company to see if they were also gluten free, here's their response:

"Thank you for taking the time to contact us here at the Bestlife. We always appreciate hearing from consumers who care enough to reach out to us with their comments or questions.

We are happy to report that all of our products are Gluten-Free.

Thank you for supporting Bestlife

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: Open Original Shared Link

They had some helpful literature in there too.

Thanks for the support!

When is his biopsy date? So sorry that you have to endure this with him, poor little guy

You've made it this far and well done for helping him with the dietary changes so far. What do his celiac blood test show, are they positive? I understand in the under fives they often don't show up.

Keep us informed of your progress with him, it's a tough time for him and your whole family.

My son (7) was diagnosed with celiac (+ve bloods and biopsy) about a month ago. prior to that his symptoms really have been mild and infrequent, occasional diarrhea every couple of months and mild abdominal pain with the same time frame. I had him tested because I suspect I have celiac and have been unwell over the last year.

So, yesterday for the first time since going gluten free he had diarrhea, he was not unwell and it was only one trip to the bathroom. This morning he told me that his tummy hurt right after he had a drink of milk.

So I'm now questioning whether he has an issue with lactose, casein or both. He has cheese, yoghurt and milk every day and this is the first time I've wondered if there was an issue with dairy.

Anyone had a similar experience? how would I know if it was lactose or casein or both? I don't want to make him sicker,but I also don't want to exclude dairy unnecessarily. Not sure what to do.

I can't see a +ve test there except the first one, and that's not indicative of celiac as far as I am aware. Your EMA and Ttg were both negative. I think your doctor has got mixed up somewhere, not a gastroenterologist I hope?

As others have said if you want a definitive diagnosis then you need to be eating gluten for 12 weeks prior to testing for your blood work and endoscopy. Even if you had +ve blood work, many doctors will not give you a diagnosis based on that alone. My son had +ve Ttg and EMA, the +ve EMA means it's pretty much 100% sure that he had it, but no one I talked to would give him a diagnosis with the blood tests alone so we has the endoscopy which did confirm it. It you want to know for sure I would seek out an experienced GI doctor to do an endoscopy, if you don't care either way then you could simply go ahead and try the diet and see if you feel better.

Were you eating gluten when you had these bloods taken?

You have hashimotos, along with your IBS issues that's a red flag for celiac, I'd get the endoscopy with or without +ve bloods.

We'll do this together! I just ordered the GAPS book, some Bio-kult, and Caldwell's culture starter. I think I can find unpasteurized cultured veggies at Whole Foods while I attempt homemade veggies. I'll have to start on the weekend as I don't have time to make soup properly the next few days.

What sold me is that Dr. Campbell-McBride says it can help autoimmunity. I would do a lot to get rid of this thyroid inflammation - I think it's part of why I feel so sick all the time.

Ok, you're on!

I have the probiotics, the digestive enzymes should come tommorow. I don't have the book yet, I 'll need to get that and get going on the soups/broth before next week.

Female. My thyroid is so messed up it's hard to get a bead on the other hormones.

sorry to hear that.

Well I'm going to head to the butchers tomorrow and see if I can get some beef bones for broth.

There is a celiac research center at UCSD. Open Original Shared Link They should be able to refer you to a clinic or doctor who specializes in treating celiac.

Whoops I see you already got the link to Warren. I bet Dr. Kaganoff knows a decent celiac doctor who is taking patients if you ask.

I'd concur with sklyark, I'm sure they would be willing to recommend someone good in that area.

Joy, will GAPS help obnoxious fatigue and mild depression? I keep thinking I'm showing signs of some sort of intolerance but it's not specific enough to track down. I feel foggy, metallic taste, and kind of vaguely poisoned. My asthma is a little worse too. I've thought of trying FAILSAFE because they list so many of my vague symptoms, but now you have me wondering about GAPS. It seems like my health started back downhill when I had bacterial bronchitis and had no choice but to take azithromycin last spring. (I tried HARD to avoid taking it but I was headed for pneumonia.) By summer I'd gone hypothyroid with the Hashi's much worse and I've not felt normal since.

Skylark I'm going to try and get going with it this week if I can. I made a spreadsheet over the weekend that listed all the foods allowed on the FODMAP diet, I then cross referenced it with the GAPS foods and that ruled out all grains (which I was going to stop anyway) and sugars. I have also decided to stop all the nightshades, might as well go for it!!

I researched a little and ordered some probiotics and digestive enzymes. I have Vit D3 in drops already, I hate taking pills so the less the better. I got them all on amazon.

It does sound like the antibiotics might have upset your gut

EDIT: Skylark - are you male or female? I'm female and wondered if hormones might be a factor for me, but I can't find any info that would really support that.

Does anyone have a celiac specialist in southern california

I saw Dr Treyzon at Cedars Sinai, he was a very caring and knowledgeable gastroenterologist, I wasn't there for specifically celiac though but I would be confident in consulting with him about it.

Or what about these people? Open Original Shared Link

I sent a question to the University of Chicago Celiac Disease Center on facebook regarding the DGP being elevated and what they thought that would mean if a child came back with a negative biopsy. I wanted to know if other tests were negative but the Deaminated gliadin IgG was flagged as HIGH and positive if that would possibly mean more of a gluten intolerance rather than celiac. I did not receive the answer I was asking for...but their response was a little surprising:

"DGP of the IgG type may be "falsely" positive, meaning they can be slightly elevated in people who do not have celiac. So, the biopsy (done after being on a gluten-containing diet for at least 12 weeks) becomes of paramount importance."

That was a first that I've read that the IgG could be falsely positive. Also, my son was not just slightly elevated...as the results, which told me it did not go to an endpoint or something like that, but was flagged as in the high range.

So I responded back asking what slightly elevated means in their eyes...and if they'd anwser my original question of "if the biopsy is negative could that possibly mean a gluten intolerance."

Don't have an answer really, just wondering it you had the Ttg and the EMA done as well for your son?

I take it from your post that your son did have a -ve biopsy and the postive bloods, or is this a hypothetical question?

I guess it's possible that the biopsy potentially missed any area of damage caused by celiac, do you know where the biopsies were taken and how many?

Venison is wonderful! I wish I had easy access to it

I recommend you read the GAPS book and consult your physician rather than take my word for what supplements to use. I have a blog linked from my profile and one of the posts on there is called GAPS Resources. That one has links to the book, etc. We also have a Starting GAPS post and I'm in the process of blogging the stages, only have Stage 1 up so far.

I'm really not big on supplements but the diet does suggest using some. What we use (not as regularly as I should, I forget to take them) is:

- Fermented Cod Liver Oil from Green Pastures (the fermentation is key)

- Mineral drops from ConcenTrace

- GutPro Probiotic Powder (Dr. Natasha recommends BioKult but we use GutPro)

- Epsom salt baths

The diet is heavy on home-fermented foods as a source of probiotics. We make sauerkraut, ferment our own pickles (all kinds of pickled veggies), make kim chee, make yogurt (from whole, raw, organic milk), make water kefir & dairy kefir, and kombucha. We tried beet kvass, too, but it wasn't a big hit.

The most important thing, imo, more than supplements, is to get the body to a state where it can accept nutrients from our food. The GAPS diet is aimed at providing the most easily digested and absorbed food so that you can get the most nutrition while allowing your gut to heal. You also starve out the overgrowths of candida and other bad bugs by drastically reducing sources of sugar in the diet (it's based on the SCD), while introducing beneficial flora.

Thanks for all that info, I'll need to spend some time working it all out. I can't tolerate casein so all the fermented dairy it out. I might give the other stuff a go though.

Thanks to everyone for your replies. It seems that, basically, it isn't totally unheard of. I guess my real issue is that I've lost confidence in my doctor. She never sent me to a Gastroenterologist, and when I asked for a referral to a dietitian, she told me she didn't know one and said I should call the Celiac Association. The worst was when she called to tell me my scores were positive, she said "you're good at googling, so go on the internet and you can read up on everything you can and can't eat". I felt pretty alone in the whole thing. Maybe I should call her back and also ask for my actual scores on the blood work? Everyone on here seems to know them, and I have no idea.

Oh ya, and she did say that I had to start on a gluten-free diet asap, so I started the day I was diagnosed, which was 7 days ago. I'm still feeling really sick - headaches, dizziness, nausea, fatigue, etc - so I'm very worried about going back on gluten. And I have no idea if I'll even be sent for a biopsy at this point. It seems like my doctor is pretty against it. I mean, I don't WANT to go through an invasive procedure, but this is a life-altering diagnosis, so I really just want to cross my "t"s and dot my "i"s so to speak.

EDIT: I meant to also say that I can only go to a GI or dietician with a referral from my doctor. That's how things work here, so my hands are tied without her help. I was also told that I'd have to wait 3-4 months to get in with a GI once I do (if I do) get a referral. I can't picture myself having to go back on gluten for the next 4 months!! (

do you live in the USA? If she won't refer you can you see another primary care doctor who might?

no, they are in the esophogus... the GI saw them during the endoscopy.

I didn't think that celiac would show up in the esophagus, perhaps someone with more knowledge can enlighten us?

Typically, but not exclusively, you might expect to see it in a child in the duodenal bulb area,at least that's what I've read and what our paed GI said. did he comment on that?

My son had obvious areas of erythema in the duodenal bulb, further down the duodenum it looked perfectly normal in the photos but biopsies revealed mild villous atrophy there, and moderate atrophy in the bulb area. Did he biopsy those areas?

We, too, are in the process of healing our leaky guts. We are using the GAPS diet for this and are 8 months in.

Do you take any supplements on the GAPS diet?

I need to look into getting meat from organic farms, there are none nearby so I would have to order online probably. I can get venison for nothing if I speak nicely to some people,it doesn't seem to cause me problems. I can also get bass fish for nothing too, thought I'm not a huge fan it's easy to digest.

I'd love to get some non farmed salmon, but that's more expensive per lb than fillet steak.

I am a blood test negative celiac. No doctors wanted to biopsy because of that. I am a firmly diagnosed celiac though. When gluten was an issue when a doctor guided elimination diet caused a severe reaction I was referred back to a GI doctor who demanded a second challenge. Well I had such a severe reaction to the challenge, including a severe GI bleed I was then 'officially' diagnosed. The idea that the biopsy is the 'gold standard' is slowly losing it's strength and it is quite possible to be diagnosed with strongly positive blood tests. Some of the newer blood tests are very specific to celiac and some doctors are diagnosing based on that alone or on positive bloods and response to the diet

I'm not saying that you cannot be diagosed without the biopsy as you have been, but it can be hard to be taken seriously in some quarters without the biopsy diagnosis. Like you I have -ve bloods and a severe GI reaction, I've seen 3 GI's (two hopeless though) and none were willing to diagose me, even now with my 7yr old son a year later being diagnosed (by biopsy) with celiac, still no consensus on a diagnosis for me and I think that's how it will remain as I won't knowingly eat gluten again.

My son was biopsied last week, he had GI symptoms, +ve EMA and +ve Ttg, and still the pediatric GI discussed at great length the "what ifs" if his biopsy were to come back -ve.

I did speak to someone at the Celiac Disease Center in Chicago recently and she said that at the latest international conference they were moving toward a diagnosis based on certain +ve blood tests only, but that still would exclude you and me, and I think you would need a +ve EMA to get that.

Yes, and it used to depend for me on how much I consumed and what I consumed it with- maybe part of the food combining theory,, I don't know. If I ate just corn chips, well bingo. But if I had a burrito maybe not. But it doesn't come and go any more. That being said, I am tolerating some potato starch and corn starch now (I think because the lectins tend to be concentrated in the skins since they serve a protective function for the plant to deter insects.)

I think you may be onto something with the food combining thing. I have not read about it but I wondered if it was caused by a 'perfect storm' type thing where a combination of certain food, me being tired, and maybe some other factors all conspired together to cause it. I just don' know what the factors are though. Maybe I should just eat bananas and rice!

Shroomie, can the lectin thing come and go? Like eating a food fine most of the time, but crashing and burning once in a while on the very same food? I had chronic GI trouble with the gluten, not OK for a couple months between wipeouts.

I feel a little more encouraged that I'm not the only one with these random attacks! I have ordered a probiotic from amazon that I saw discussed somewhere else, I plan to completely cut out soy and corn also.

This might be nothing to do with it but I've wondered if the 'stuff' they add to raw meat to bulk it out could be causing me problems, they add broth, which is labeled gluten free, but goodness knows what other junk is in it. We had pork chops that I broiled recently that were so salty they were almost inedible. Beef and pork in particular don't seem to sit well with me anymore.

I have found supermarket meat hard to digest lately, but if I can't eat beans and legumes them I don't know where I can get my protein from! I might need to speak nicely to some deer hunters and stock up on that!

I almost could have written your post, although I don't get full body symptoms as horrible as you're describing. I just go into orbit around the toilet for 2-3 hours until my intestines empty themselves out, get dehydrated, and feel tired the rest of the day every month or two. Sometimes my stomach will be upset for the next few days. The D was chronic until I got off gluten, then it got a lot better.

Like you, I'll still have an episode out of the blue every couple months. It's frequent enough that I don't think it's always a GI virus, plus it's what I used to experience all the time on gluten. I've gotten gluten CC'd accidentally a few times without a severe reaction so I'm pretty sure it's NOT gluten at this point.

It's terribly hard to troubleshoot this when it only happens occasionally and no particular food seems to trigger it. I've suspected yeast, nuts, red wine, and soy, but I've eaten all those foods multiple times since with no episode.

I've noticed a couple times it happened after eating chicken but I'm not sensitive or intolerant to chicken. I eat it all the time. I'm starting to wonder if I'm not being careful enough when I handle raw chicken (I THOUGHT I was careful!!!) and getting mildly salmonella poisoned. Salmonella isn't supposed work that way but maybe I'm more sensitive to it than some folks. I've gone crazy OCD handling raw meat using hand sanitizer after scrubbing my hands and Lysol on anything I might have touched (faucet, dishwasher handle, etc.) to see if it helps.

Hmm, that does sound like me! The worst part is not knowing when it will happen as there is no discernable trigger, I feel like I'm being attacked by the invisible man! Like you I am eating soy, eggs, and everything else for weeks on end with no apparent symptoms, then bam, it happens again.

I'm from Scotland and now living in the USA, the worst part at the moment is that I'm too frightened to travel on my own that kind of distance in case it happened on the plane or in the airport and no one would be with me. It happened in Gatwick airport earlier this year, it was awful and we had a 5hr wait for our plane to Scotland. Thankfully my husband was with me, but it was really grim. The diarrhea did not last too long, but felt like I was dying for hours afterwards.

EDIT: Skylark, have you ever tried any kind of regimen of probiotics and/or other supplements?

Hi everyone,

After years of being sick, chronic infections, GI issues, losing my hair and my iron rocketing to a flat line, I spoke to a friend at work who suggested I should maybe be tested for celiac disease. So I called and requested it, and my doctor sent me for blood work and called back a few days later to say that I was confirmed positive for celiac disease. After reading online, and speaking to someone at the Celiac Association, I asked my doctor about being sent for a biopsy and she said it wasn't necessary. She said the blood work is now considered the gold standard in diagnosis. Can anyone confirm that she's right??

Also, I see on other posts that people say how much percentage they are recovered. What does that mean? How do you get those stats?

I'm just so overwhelmed right now.....I feel like I'm walking in a haze.

You doctor has been misinformed, a biopsy diagnosis is *still* the gold standard required for a diagnosis. Is it a gastroenterologist that told you this? There is some talk about diagnosis, for some people, being based on bloodwork only in the future, but that's certainly not the case at the moment.

When did you get the blood results and are you gluten free yet? If it's only been a few days or weeks then I would continue eating gluten and see a GI doc as soon as possible for endoscopy. I'd look for one that has some interest or experience with celiac, do you live near any of the celiac centers?

Some people are happy to simply go gluten free and be done with it, but you should know that if you go gluten free now it would potentially be very hard to return to eating gluten in the future just to be tested. I wanted to know if it was celiac or non-celiac gluten intolerance as it has implications for my family in terms of getting them tested, my insurance will pay for testing for 1st degree relatives of biopsy diagnosed celiacs.

EDIT: All that said, I would agree with skylark that given your iron deficiency anemia and the +ve bloodwork I think a biopsy would show that you have celiac. I still think if you're not yet gluten-free that you may want to give it some thought, especially if you have kids, before you start the diet.