Celiac Diagnosis Difficulties

[Milkay]

Hi everybody

 

This is my first post and I am writing from Europe (Belgium to be precise).  I am going through a difficult phase at the moment- perhaps many of you went through before - trying to have a concrete diagnosis of Celiac.

 

A brief backstory, last couple of years I have been low-carbing just as an experiment on my body so basically I avoided anything containing gluten.   Some months ago I tried eating bit of carbs and I had diarrhea and lots of bloathing and pain in my intestines.  A blood panel was done which came back negative (not surprising because I had very little carb in take anyhow) but the lymphocytes on the intestine were elevated. The doc told me that I could be grade-1 celiac.  In a time window of 2-3 months,  I developed lactose intolerance and strange food allergies. I used to drink plenty of raw milk and now even a small quantity gives me so much problems. I can't eat red apples for instance, I am getting these large pimple looking reaction on my skin. So a few days ago I got another blood panel done which was negative and 2nd biopsy. Now I am waiting for the results.. Just wondering if some of you also experience a similar trend that goes very quickly (i.e from having the first symptoms to developing other intolerance). I wouldn't have a problem refraining from carbs since I have been doing that the last couple of years and I am very happy with this whole-food, low-carb approach but not I can't eat any diary etc so this is bugging me plus still the lack of a solid diagnosis..

I'd be happy if you can share your insight into this,

Best Wishes

M.

[cyclinglady]

Please clarify. You were gluten free or "light" when you had both celiac blood panels done? Please check out the University of Chicago's celiac website for proper testing procedures and show your doctor. You have to be eating at a minimum of a slice a bread (or equivalent) to get an accurate test result.

You can develop food intolerances at any time. If you were in the early stages of Celiac disease and have progressed that could explain the milk intolerance.

[Milkay]

Please clarify. You were gluten free or "light" when you had both celiac blood panels done? Please check out the University of Chicago's celiac website for proper testing procedures and show your doctor. You have to be eating at a minimum of a slice a bread (or equivalent) to get an accurate test result.

You can develop food intolerances at any time. If you were in the early stages of Celiac disease and have progressed that could explain the milk intolerance.

Thanks for your reply. I was gluten free when I had the blood panels done and I reminded that to my doc and asked whether I should have gluten challenge and he said no ( he also added that at advanced stages of Celiac one can stay gluten free but still have a positive blood test). 

[BlessedMommy]

I'm sorry that you got bad medical advice. You do have to be eating a normal diet with gluten for 8-12 weeks in order to avoid false negatives on bloodwork. 

 

I look forward to the day when celiac testing doesn't require lengthy gluten exposure.

[nvsmom]

Thanks for your reply. I was gluten free when I had the blood panels done and I reminded that to my doc and asked whether I should have gluten challenge and he said no ( he also added that at advanced stages of Celiac one can stay gluten free but still have a positive blood test).

Almost every celiac will have a negative blood panel after being gluten-free for a time. Some of us take longer than others for our blood tests to get back to normal but it almost always gets there. I, for instance, took over half a year to get to normal but others are there within a month of going gluten-free and others are negative (even while eating gluten) even though they have awful intestinal damage... Your doctor has it a bit wrong.

For accurate blood tests, a gluten challenge of 8-12 weeks is recommended, and the biopsy needs 2-4 weeks. One to two slices of bread per day is all that s needed.

Good luck. I hope you find answers.

[moosemalibu]

I agree with the other replies.. you must be eating gluten to have a true negative for Celiac. Typically you have to eat a slice of bread for 8-12 weeks and then get your blood drawn for titers.

 

Infiltration of the small intestine with lymphocytes is seen on biopsy but it can also be seen with other conditions. I would definitely consider you a very likely Celiac based on your history/symptoms. My GI issues seemed to happen all of a sudden as well... diarrhea, lactose intolerance, multitude of other symptoms but yes.. seemed to be 'out of the blue.'  Seek a second opinion and/or try to educate your doctor on appropriate testing. University of Chicago Celiac Center webpage has a great FAQ.

[Milkay]

Thanks all for sharing your ideas/experiences. Greatly appreciated. I'm going to see my doc over a week or so hopefully will keep you updated on the biopsy outcome.

 

Cheers

[Milkay]

Hi Everybody,

A short update on my status. My lactose intolerance test came back positive. And they found helicobacter in my stomach for which I am using antibiotics now. No damage on the intestines was observed. So my doctor suggested gluten challenge which I will start after antibiotics treatment.  In the weekend, I ate a tiny amount of cheese and it was horrible, so I told him that it could be also casein and protein whey etc, but he completely missed my point and didn't understand. ( I printed the paper of Cross-Reaction between Gliadin and Different Food and Tissue Antigens  by Aristo Vojdani and he didn't bother to look). I am a scientist myself  and it is so frustrating to see some of  MD being so narrow minded. 

Stay safe everybody

 

M.

[kareng]

Cross- reactivity isn't considered to have any scientific basis. So, that is probably while an MD wouldn't consider.

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Did they biopsy the intestines? celiac damage isn't always easy to spot by eye.

I don't know a lot about lactose intolerance but, don't most cheeses have a little lactose? Maybe you should give it a little time to heal everything and get your gut flora back to normal.

[Milkay]

Thanks for your input Karen.  I can understand why the cross-reaction was claimed to have no scientific basis at the time. However, this data is very recent (published in January 2013) and it takes always some time before other labs can try to duplicate the results and add on top of it. So, I can say that the published work seems to have executed well and the evidence seems very solid to me.  

 

I tried also lactose-free milk which contains the lowest amount of residue- brand available here in Europe and I still had bad response. I am only OK with clarified butter which has negligible amount of lactose as well as casein etc. 

 

I am certain that university of Chicago will evaluate this new data and update their website in the future. But it takes a while before things change..

Kindly

[kareng]

They are not the only Celiac researchers saying this. They just have the easiest way to link people here to the info. As of the International Celiac Disease Symposium in September, which I attended, this " cross- reactivity" theory is still not considered valid.

The fact is, most Celiacs do fine with dairy, coffee, whatever you want to claim " cross- reacts". There are certainly people in the world, with or without Celiac that cannot eat dairy for various reasons,

You have only been gluten free for a few weeks. It can takes months, even years, for your GI track to get back to normal. Give it some time before you decide you will never eat foods again. If they bother you now, don't eat them. Many of us have been able to eat foods like dairy, after we have healed. As you know, the damaged villa help us to digest the dairy.