Auto immune disease.... Celiac disease

[davidst01]

I raised a topic recently regarding mouth ulcers that I've had since sept' last year- on the upper palate of my mouth. The dental pathologist at the hospital mentioned that it could be one of four things- one of them was 'Auto immune disorder'. 2 different Dr's said that it could be from food- the ulcers recurring.

I found out that if you are experiencing any of these symptoms, especially a combination of several of them, you may have an autoimmune disease.

1. Joint pain, muscle pain or weakness or a tremor

2. Weight loss, insomnia, heat intolerance or rapid heartbeat

3. Recurrent rashes or hives, sun-sensitivity, a butterfly-shaped rash across your nose and cheeks.

4. Difficulty concentrating or focusing

5. Feeling tired or fatigued, weight gain or cold intolerance

6. Hair loss or white patches on your skin or inside your mouth

7. Abdominal pain, blood or mucus in your stool, diarrhea or mouth ulcers

8. Dry eyes, mouth or skin

9. Numbness or tingling in the hands or feet

10. Multiple miscarriages or blood clots

I've had the first 9 symptoms in the last 12 months except the 10th- Ive had weight gain and not weight loss which my gf has commented on several times. I had hand tremor last year all the time, rash on the nose 1 month ago, 2 weeks ago in Laos an ulcer on the right side of mouth that had distinct white patch. Ive had memory issues for sure. Im currently having weird abdominal pains and hair loss this year.

Im mindful that its not wise to make my own diagnosis but Ive been to 2 ENT dr's, had a biospy via a dental pathologist and still have symptoms the main one being the mouth ulcers. Further investigation on the web makes me think that I could have 'Celiac disease'

I downloaded a fact sheet on Celiac disease from a U.S health organisation that said mouth uclers are a recognised symptom of celiac disease. Also it said, once diagnosed, a diet free of wheat, barley, rye and oats will alleviate the symptoms, usually within weeks, and will help prevent the onset of related illnesses. I eat heaps of bread and rolled oats every morning and thus think that I need to exclude this from my diet for a month and see what happens.

I live upcountry LOS and thus not sure if I should head to bkk to a decent hospital or go and see a GP at the local one here and get blood tests like ESR (Erythrocyte sedimentation rate) to see if I have inflamation. What sort of dr should I see?

Have you ever had Celiac disease and did you succeed in treating it?

Finally, if my gf is pregnant whilst I have an auto immune disease like Celiac does this mean that the baby will be born unhealthy? I read one document that said 'every 2.5min a child is born with genetic pre disposition to celiac disease

Any advice is appreciated. many thanks

[bmore99]

Thailand is like paradise for celiacs. All traditional Thai food is gluten (and dairy) free.

Also additives in processed food are seldom derived from wheat like in Europe. Without being aware of it, I was living gluten free in Thailand and only had problems when traveling to Europe.

Having the genes (1/3 of Caucasian population) doesn't mean you will get celiac disease (only 1 out of 133). Children of celiacs have a 10% chance to develop the disease.

Many celiacs (especially in the USA) self diagnose, either due to uncooperative doctors or to avoid insurance exclusions.

About 50% of celiacs also have digestive issues with dairy, so cut both gluten and dairy for a while and check how you feel.

However, if you want to be officially diagnosed, once you are gluten and dairy free, it won't be possible until you go on a gluten challenge for 2-3 months again. Alternatively, you could wait a few years to be diagnosed, as less intrusive diagnostic ways are currently under development.

There are many forums on the Internet for celiacs where you can find all the answers to your questions.

I find a gluten/dairy free diet very doable in Thailand.

[thepool]

Best possible advice is to stay away from the internet !

If you are concerned then a Consultation with a Physician at one of the big hospitals in BKK should put your mind at rest.

[bmore99]

Normally I would agree that staying away of the Internet about diseases is a sound advice, same as I think it is wise to get tested by a doctor.

Unfortunately reality about celiac disease is different. Without the net it's impossibly to acquire enough knowledge to adhere to a gluten free diet.

To get properly diagnosed, you'll also need some knowledge to verify if your doctor is performing the appropriate tests. Not that many doctors out there with enough knowledge about and will to test for celiac. Estimates are that only 15% of the potential celiacs are actually diagnosed.

I was misdiagnosed for only 35 years until I got the correct info on the Internet and went to a hospital specialized in celiac disease.

I do recommend to check the serious celiac patient association's websites. Every western country has one:

-USA celiac.com

-AUSTRALIA coeliac.org.au

-UK coeliac.org.uk

-etc

[Sheryl]

I would start with a thorough physical check up, and add on B12 levels and a full thyroid panel.

When you review the results with the doctor, mention your various symptoms/concerns.

Celiac disease is over-hyped on the net. certainly there are people with it (including some undiagnosed) but it is no where near as prevalent as some websites would have you think. That said, if a complete physical exam fails to find anything (no anemia..normalB2 levels, normal thyroid function etc) no harm in trying an elimination diet to see if it helps with your symptoms.If it does and you want confirmation, then see a specialist in celiac disease.

[Pikiss]

Coeliac Disease (CD) can manifest itself in an unbelievable wide range of symptoms: I had years of stomach problems (cramps, diarrhea, vomiting, bloating), low fever coming and going, heart burn which turned into reflux disease, hair loss and a during a year or so, also small ulcers in mouth. After diagnosed most people start feel significantly better after only a few weeks or months gluten-free diet so well worth to go see a doctor.

Start with a blood test (gliadin-, reticulin-, transglutaminase- and endomysium antibody tests). If antibodies are present it would be wise to do also the small bowel/intestine biopsy i.e. upper gastrointestinal endoscopy to be sure. In my home country (Finland) they have developed a innovative do-it-yourself testing kit available in pharmacies but probably not available here. (it’s quite amazing, only requires only a drop of blood from the fingertip and identifies the presence of coeliac antibodies in minutes). Endoscopy cost me 500 EUR (22 0000 baht) back home where I chose to do it because I felt they have more knowledge in coeliac disease in the west. I believe endoscopy is about the same price here in Thailand.

Nine months after my CD diagnose, I’m still struggling but feeling much much better than before. Internet has been the most valuable source of information. For example, I couldn’t understand why I still got sick even though my diet has been 100% gluten-free. After reading CD web sites and asking around in chat rooms I had a light-bulb moment, my stomach didn’t tolerate a carbohydrate called inuline. It is an additive that has probiotic effects and therefore very popular in dairy products. It also makes food more thicker or crunchier and it turned out that there was inuline even in my morning porridge.. Now I am also looking at so called FODMAP carbohydrates which are known to be poorly absorbed in the small intestine for some people.

[Sheryl]

OP does not indicate any problems with diarrhea or vomiting....

[thepool]

"Start with gliadin-, reticulin-, transglutaminase- and endomysium antibody tests"

Where does one obtain these tests ?

They are not routine for certain !

[Pikiss]

Where does one obtain these tests ?

They are not routine for certain !

It’s not a standard blood test, maybe Sheryl can recommend a clinic or gastroenterologist. I didn’t do the blood test, just went straight to a specialist to have the endoscopy (tissue samples in small intestine) done because I was so fed up with being sick all the time and by that time I was convinced that the problem is deadly serious. I have stomach cancer in my immediate family so actually I was relieved for the coeliac disease diagnose. After six months my doctor asked me to do the blood test to see if there were still CD antibodies: the test showed none which means that the gluten-free diet was working.

[thepool]

You and anyone else reading this link may care to look here

http://ltd.aruplab.com/Tests/Pub/0050698

Note the warning !

[davidst01]

Im the OP and appreciate the comments.

To answer brief questions above, no I have not had diahorrea or vomiting

I live up country and went to the local private hospital and picked up the blood test results. The dr was incompetent but the blood tests indicate high levels:

- lymphocyte 48.4 (range 20 - 40)............. I also had a high reading in december from a bkk hospital.

- Eosinophil 3.5 ( rang 1 -3)

- T4 (thyroid) 11.02 (range 4.7 to 9.3)

My ESR is 5 the range is 0 to 15 and thus it seems I dont have inflamation.

I think I need to go and see an Endocrynologist at a big hospital to get diagnosed.

As I suffered 9 of the 10 issues above in the Original post above I am convinced that I have an auto immune disease. 2 weeks ago I purchased a german brand of museli which made me sick and feeling weird for 4 hours and thus I think I have a gluten intolerance.

If anybody knows a doctor that specialises in auto immune diseases please let me know thanks

[Sheryl]

Those lymphocyte and eosinophil numbers are not significant if your overall WBC count was normal.

What was the TSH?

And where exactly do you live?

[davidst01]

I live in Issan and yes the WBC was normal. If Ive had the lymphocyte reading twice now (dec and now) high then surely it means something is not right. Plus the thyroid being out of range.

I think its easiest to get on a bus to bkk to see an endocrynologist.

[Sheryl]

Dr. Rosanee at Bunrungrad is excellent for thyroid issues.

Bring your lab results.

Again, 48.4% lymphocytes out of a normal WBC is not significant.

[thepool]

"The dr was incompetent but the blood tests indicate high levels:"

It is interesting that these observations can be so casually made and with absolutely no evidence apart from a belief that an inconsequential, essentially normal , blood test is somehow "significant".

[faraday]

I would also have your Thyroid checked again, in particular Reverse T3.

[Sheryl]

A full thyroid panel is in order and possibly thyroid antibodies.