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Celiac Or Not?
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Hi,

I have just found the site, and theres a lot of interesting information on it and it would be nice to hear from someone who can give some advice as my current doctor seems to have drawn a big blank

I would like to know if anyone could advise whether after a bout of food poisoning (where I was pretty much allergic to any food I ate) a IgG blood food intolerence test might provide inaccurate results, or cause a person to get celiac disease.

I'm happy to get retested with the enterolabs test if thats possible from the UK

I have been trying to get well for 11 months now, and I keep relapsing about once a week back to the same symptoms, bloating and gurgling stomach with no apparant link to any particular foods. I am eating wheat again, and I don't seem to be reacting to it..... maybe I am mistaken though and I am reacting after a certain time?

Can't help thinking I'm missing something, I just have no energy at the moment and feel like I'm not absorbing much of my food. I lost 10kilos in the first month I got ill and have weighed 65kilos since (I used to be 75kilos). I can't put on weight at all

I was interested in the comments about tropical sprue too, maybe I have that. Can you get that in other areas of the world?

I am feeling a little better, but if I could get rid of the bloating and be able to dispel/belch this wind up and get some energy back - My quality of life would be so much better.

I would appreciate peoples advice - Thanks for reading.

Craig

===================================================

My Story

======

Well, I was on holiday last year in Malia (Greek resort) and got very bad food poisoning on day 4 of a 7 day holiday.

Initial Symptoms were feeling bloated in stomach but not being able to dispel the wind/belch it up - this gave me a stomach pain and sometimes a little panic attack. Eventually, I'd be able to belch it up but it took some time and I felt very nauseous.

Symptoms were ok at this time eating a meal, normally flared up three hours after.

I managed to get through the holiday by drinking far too much alcohol, which masked the symptoms completely (I expect thats true of many other illnesses!!)

On the day we had to fly home, I felt absolutely terrible and didn't eat breakfast as I knew I would react to it.

Needless to say, by the time we got on the flight my stomach was very bloated, I felt very nauseous and wanted to be sick (but couldn't). I actually asked to be allowed off the plane (with 300 passengers waiting on the runway). They talked me round and soon after take off the pain got worse and I came so close to passing out with a constant pain in my stomach.

The pain relented a bit when we landed, I've since found out if you do have bloating - going on a plane makes the bloating much worse!

Anyway, that was 11 months ago - I've taken many mediations and advice but am still not better. I don't know whether I have celiac disease or not and would like to find out!

I'll try and list the medications and advice over the last 10 months, maybe someone has a similar story or advice.

June 2003

=======

Event: Food poisoning on holiday

Symptoms: Bloating pain/cannot dispel wind, chest pains, stomach pains, panic attacks, nausea, insomnia due to symptoms. Acidic stomach?. Food sitting in stomach, feeling like not being digested for a long time.reacting badly to all food i ate even after one mouthful

Lost about 10 kilograms in weight very quickly.

Mediaction taken: Gaviscon, helped acidic stomach but didn't help bloating and stomach pains

July 2003

=======

Event: Went to see doctor, doctor "guessed" heliobacter and prescribed due to long NHS waiting list for Endoscopy. Referred me anyway

Medication prescribed: 3 phase 3 week mediaction to cure heliobacter(amoxillian, metadinprazole, ?)

Did it help :

For a week, yes. Felt a bit better. Then back to old symptoms.

August 2003

========

Event: Decided to get a blood food intolerence test

Results: Results came back saying I was allergic to Cows Milk, Gliadin (Gluten), Rye, Wheat, Yeast.

Did it help: Stopped having gluten and dairy foods for a month. No real change. Went back to eating Gluten again

August 2003

========

Event: First visit to nutritionilist. She recommended great smokies stool test

Results: No parasites, but overgrowth of Proteus Vulgaris, Citrobacter Freundi, Klebsiella pneumonia . Very little good bacteria

Medication: Acidophilus, Berberine and Grapefruit seed extract, Uva Ursi, Oil of Oregano

October 2003

=========

Event: endoscopy appointment (at last!). Biopsy resulted in negative heliobacter but hiatus hernia.

Prescribed: Dom peridone (30 day course).

Also took: Bio-Care acidophilus forte (1 in the morning 30 mins before meal), Solgar Multivitamin (with dinner)

Did it help:

Yes, stomach pains went away after a week. Food seemed to get digested better and didn't sit in my stomach.Bloating remained.

November 2003

===========

Event: Symptoms very bad. Went to specialist, and had barium xray/barium enema/chest xray/ultrasound/blood tests

Results: Specialist couldn't see anything wrong, couldn't advise any more other than it "might get better in a couple of years"

May 2004

=======

Nutritionlist suggested I take the following for food allergy/gut repair: Too early to tell whether these help but id be interested to see if people think they might help

1 * Kirkmans Acidophilus (first thing when I get up) This is a pretty high strength one and seems to make me more bloated

Breakfast supplements

1 * MSM tablets

Lunch supplements

Ginger supplement (30 minutes before meal)

2 * MSM tablets

Dinner supplements

Ginger supplement (30 minutes before meal)

1 * MSM tablet

1 * Solgar multivitamin

Nighttime

4 * triphala internal intestine cleanser tablets (ayurvedic remedy)

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I'm not sure why you're eating wheat again if your blood allergy test came back positive. I'm presuming, based on what you wrote, that you had allergy tests, not intolerance tests. If you are also intolerant to milk, you'll get those symptoms. Are you eating all the things that you tested sensitive to? It can take a number of months (at least) to see real improvement, so you may not have given it long enough.

If you've been eating things you're sensitive to for a while, you may have reached a state of general unhappiness in the body, so you don't particularly notice any single ingestion of something you're sensitive to.

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hi,

thanks for the prompt reply.sorry i had a food intolerence test but wasnt sure if the results were conclusive as my gut was rejecting all food at the time of the test.

regards

craig

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Hi Craig,

I would have to go with what's already been said and wonder why if you know you're allergic to certain things and are having such digestive distress you wouldn't try a bit - or even a lot - longer to see results with removing them from your diet.

You didn't mention whether the supplements you are taking are helping much ... you also didn't speculate as to how successfully you had eliminated gluten when you did go off it for a month. As many posts here can attest, unless you go for a very strict elimination diet, it can be hard to get the hang of things at the beginning, and to trace and remove all gluten from what you eat. If you had missed something you were having frequently that might explain why your symptoms didn't change much.

The other thing I wasn't clear about was whether you had had full blood testing done for celiac disease?

Best,

Kaylee

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The more severe your symptoms, the longer you have to be on the diet to see improvement. I would guess that one month was not long enough to be gluten/dairy-free. Try the diet again, but for at least 3 months.

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Hi, I'm Craig, 33 from the rainy United Kingdom which i forgot to add last time

Thanks for everyones comments. I forgot to mention that i went back on a gluten and dairy free diet last week. I am checking every label but maybe there is some hidden gluten I am missing still.

Everyone says i need to give it more time - so that is what i intend to do.Its going to be hard though! I really miss my sandwiches and

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While the IGg is not a confirmed diagnosis, a high one is an indicator. Sometimes supplements have gluten in them for binders and thickeners. Look for words like maltodextrin, modified food starch, and hydrolized protein in the ingredients. Sometimes these ingredients are ok, sometimes they are not. Just hang in there, and come talk to us if you need to.

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Thanks for the reply

>> While the IGg is not a confirmed diagnosis, a high one is an indicator.

Just checked my overall detailed food intolerance results and I am not sure whether these are "high" or not, just that I have an intolerance to them

(Just found out the scale is between +1 and +4)

Any ideas?

Thanks

Craig

Grains - Avoid

=========

Wheat +3

Gluten (gliadin) +2

Rye +1

Grains - Rotate

==========

Barley

Dairy - Avoid

=========

Cows milk + 3

Others - Avoid

=========

Yeast +1

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Wacky - those look like allergy test results. I haven't seen blood test results look like that before. The terminology is a bit odd though, because "gluten" does not mean gliandin. Gliandin is one (of many) glutens, and is specific to wheat, which makes it yet more confusing why wheat is listed separately. But sometimes those medical reports are done in confusing ways.... sigh.

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Hi againn,

I'm not familiar with the blood test results you have but agree that they don't look like the ones for results for the celiac blood panel.

A friendly suggestion, since you seem to want to be clear about whether or not you have celiac disease, is to get yourself tested straight away before being on your gluten free diet much longer (and preferably go back to consuming gluten if it doesn't make you feel too sick until you can get the test done). The reason for this is, first, that generally it is considered important to be consuming gluten to get the most accurate blood test results and, second, the longer you're off gluten the greater the risk you will find it hard to go back on it if it is indeed causing the trouble.

I am assuming that the tests for celiac disease are the same in the UK as in North America. In case you haven't already tracked down this info: to get the clearest answer with blood tests the following should be done:

- antigliadin IgA and IgG

- total IgA (to see if you're IgA deficient, in which case AGA IgA would be meaningless)

- anti-tissue transglutaminase (anti-tTG)

Results from these tests aren't considered perfect, but they're a good start. The main thing is - if you're interested, don't wait!

Best,

kaylee

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I am so confused I just dont feel well I have afirst cousin with celiac disease. I have been diagnosed with hypothyroid disease 7 yrs ago and am still very tired. deppressed, cold intolerant,digestive problems mostly bloating stomach problems, my mom has osteoporosis and stomach probs as does grandma. my 12 yr old has alopecia, add, anemia . I am really confused with short term memory loss. I read on the internet and think i have everything from addisons to progesterone probs please give me your opinoins

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you sound, as well as your relative to be a Celiac, I would go get the Tgg blood test run to be sure. I think this test is common, ask your doctor. no insist you have it done.

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I've been going to the doctor since January. He diagnosed me with IBS, and told me to watch my diet and take Fiber supplements. He really didn't do any tests and hasn't been much help. I had a upper GI and it didn't show anything. Now about a month ago, I started getting sores in my mouth, and the doctor told me it was glossitis or geographic tongue. I'm beginning to wonder if I have Celiac Disease. I've also been having muscle twitching or twitching under my skin where I can actually see my skin moving. I also sometimes get dizzy when I lie flat down on my back, sometimes it feels like the room is spinning. I've been more tired than usual, and sometimes I get slight muscle cramping, and tingling in my feet especially when doing yoga. At first I thought all this was in my head, but now I don't think so. Why do you guys think?

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JPJess81, I've read that tingling can be from a B12 deficiency which can be secondary to celiac disease. Definitely, I'd suggest you get test for celiac disease and B12 deficiency and possibly other nutrient levels. Good luck!

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Hi all

I've only just found this site, and it seems really helpful. I've read through quite a few posts regarding test results, but after a while everything starts to merge together in my head. I've just had some blood work back and I'm not sure what it means, nor does my local doctor - and I don't see my specialist for a month (for various biopsies). Basically my results show a low Ab IgA (<11) and a low Ab IgG (<11) and a low transglutaminase Ab (<5). At the bottom of the test it says "GLIAD: Low transglutaminase Ab suggests non-specific raised"

I have no idea what this means. My usual doctor is away at the moment but has been helping me with my symptoms for the past 5 months. Since getting ill I have had various symptoms but both of us are sure it is NOT celiacs - mainly because I've actually put on weight (dramatically) and cutting out wheat, and then gluten, from my diet has not really helped. I'm booked in to hospital in a month, this has been speeded up as I have now developed anaemia, with my FBC level continuing to fall. Obviously at the moment my stomach symptoms are affected by the treatment I'm taking for my anaemia, but hopefully that will settle down.

I'm sorry for writing so much - I just really don't know what is going on. I'm sure it is all fine, but just wondered if anyone knew what the tests meant, or had had similar experiences. If it is not Celiacs (which I think is definitely the case) what could it be?!!

Thank you so much

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A gluten free diet can be quite healthy. It certainly wouldn't hurt you to continue eating gluten free, but if you want to be tested for Celiac Disease later then you need to realise that you will have to go back on gluten for anywhere from 4 weeks to a year (or more) to get enough damage done to produce positive levels of antibodies.

Have you checked into Enterolab? The offer testing for gluten sensitivity and gene testing for Celiac, as well as other food sensitivity/intolerance testing. The test range from $99 - $349, depending on how much you want done. You can view their site at :

http://www.enterolab.com

And it shouldn't effect the results if you have been gluten free for a while before hand. You can e-mail them to find out what test they would recommend given your situation.

God bless,

Mariann

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Mikeygenkey, celiac disease's symptoms are so wide ranging that I wouldn't be surprised if you have celiac disease. Here is another option for non-doctor ordered testing if you are interested in that route:

http://www.wdxcyberstore.com/celdisteskit.html

I haven't tried their services so can't endorse them but it is something for you to consider.

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I have been experiencing extreme fatigue, muscle twitches, foggy brain, staring spells, body stiffness, aching body, head itching and loose stools for quite some time. I have been to many doctors and have not received any help. Recently a friend told me about celiac disease and I stopped eating anything with gluten in it. Since the change in diet I feel so much better. Can anyone tell me if they have experienced any of these symptoms? I have read that with celiac disease, it greatly affects your stomach and it is not my main symptom. I had loose stools but not severe diarrhea. I am not sure if I should see a doctor for confirmation or just continue the diet as long as I am feeling better. Thanks in advance for your help!

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    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of grains, but I have reintroduced rice using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My Paleo+Fasano diet has been assessed by a registered dietician to include every nutrient and micronutrient that I need so I guess having a really good diet is helping too. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. A lot of the steps I have taken to avoid gluten would be seen by some as over the top but I can say that for me, when I introduced these steps, that's when I stopped getting reactions and it's all worth it. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
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