Latest Consultation with the Consultant!!

fatbuster205 · Post by **fatbuster205** » Mon Oct 08, 2012 10:13 am

I met with my consultant again today and had another great consultation. He has ordered an Upper GI Endoscopy as he wants to either rule in or rule out caeliac disease. If it is negative then he is going to refer me to a dietitian to go gluten free to see if that helps as he agrees I may well be gluten intolerant even if I don't have caeliac! He has also suggested that I stop taking Asacol as that may be why I am still going too often (8 times today!). I presented him with Tex's book - he was quite amazed! He said he will definitely read it! I told him that I have already read it twice but I am still struggling with some of the terminology!! He joked that he will test me next time!! Anyway, I should be getting the camera test in about 6 weeks and then I go back to the hospital in 3 months - unless he calls me back sooner!

As I have said before I am truly lucky with my consultant (Dr Patterson at the Royal Victoria Hospital, Belfast) - he is quite young and clearly broad minded and willing to listen. I know many of you do not have the same. But today there was a final year medical student sitting in on the consultation - so who knows - maybe there is hope for the future as well.

Post by **tex** » Mon Oct 08, 2012 12:40 pm

Hi Anne,

Wow! You have an awesome GI specialist — the kind that most of us can only dream about.

I added his name to our list of doctors who understand this disease and know how to treat it, in case any other members in your part of the world would like to have a doctor who knows how to treat the disease. But when I looked up the hospital on the internet, they don't provide any information at all on their doctors, nor do they provide the address or phone number of the hospital, let alone contact information for their physicians. (If the information is there, I couldn't find it — maybe they have another website that I couldn't find.) Here's our list, in case you haven't seen it. This it the standard list — there's a separate list for doctors who know how to treat people who have MC with mast cell issues.

http://www.perskyfarms.com/phpBB2/viewt ... 420#103420

Obviously, he is definitely interested in leaving no stones unturned in his search for a solution to your condition. Good for him. Thanks for posting an update.

Tex

fatbuster205 · Post by **fatbuster205** » Tue Oct 09, 2012 1:13 am

Hi Tex,

The contact details for the hospital are:

The Royal Hospitals
274 Grosvenor Road,
Belfast
BT12 6BA

Tel: (028) 9024 0503
Fax (028) 9024 0899

Dr Patterson's secretary's number is 028 9063 5295.

Remember that this is an NHS hospital so you cannot just book any doctor but need to be referred by your GP. However, I would recommend him to anyone here in Northern Ireland. I was previously at another hospital but was not happy with the attitude of the staff their so I requested a new referral. As I say, I have been very lucky.
Anne

tlras · Post by **tlras** » Tue Oct 09, 2012 8:03 am

I had to quit Asacol as well. Made my D worse.

I'm on of those who tested positive for Celiac in my blood work but tested negative on biopsy. I think what I have is considered Latent Celiac disease. If I were to keep eating gluten, I suppose I would get full blown celiac disease. Will never touch the stuff again. I had read that lots of damage to the small intestine has to occur before it shows in the blood work. Not quite getting it. Since they can't scope into your small intestines, maybe I do have some damage in there and don't know it as they only take a biopsy of the Duodenem (sp?).

Going gluten-free has helped me a lot but not with the D so much. Pepto is working wonders for me right now. On my 4th week and feeling great.

Good luck!

Terri

ant · Post by **ant** » Tue Oct 09, 2012 8:20 am

Dear Anne

This is good news about your enlightened doc!

My client just told me he is going gluten free simply because he has seen me order at restaurants when we have had "working" lunches. Then out of the blue he starts talking about the Paleo diet with no promoting from me (actually he asked me if I had ever heard of Paleo.........well have I!! I will be giving him Tex's book).

I really believe that on the social as well as the medical front we are "slowly, slowly catching that d***d monkey"!

Best wishes, Ant

Post by **tex** » Tue Oct 09, 2012 8:40 am

Anne,

Thank you for the information. I've added it.

Tex

Post by **tex** » Tue Oct 09, 2012 8:50 am

Terri,

You're correct. Most doctors seem to think that villus damage covers the entire small intestine when celiac disease is present, (and it probably will, eventually, after many years of progression without treatment), but like MC, especially early on, the damage will only appear in scattered patches, and you could certainly have damage in the jejunum, or the ileum, but they would never know, since they can't reach those areas to take biopsy samples.

For some patients, a colonoscope can reach a few inches into the terminal ileum, and when biopsies are taken there, inflammation is typically found, both for celiac disease and MC, (though villus atrophy certainly isn't always present in those samples).

Tex

tlras · Post by **tlras** » Tue Oct 09, 2012 9:57 am

Thank you Tex!

I see my GI doctor in 2 weeks and I'm armed and ready with questions for him. Though I'll be lucky to get more than one in. I'm finding another doctor after this next visit. Having another Celiac blood panel done next week and hopefully my anti-gliadin has gone down from 100. My anti-tissue transglutaminase (sp?) was high as well back in May. Not deficient in any vitamins/minerals, thank goodness. Had that checked a few weeks ago.

Terri

Post by **tex** » Tue Oct 09, 2012 12:50 pm

You know, when you think about it, it seems kind of dumb for some doctors to insist on a confirmation of villus atrophy before handing down a celiac diagnosis. A few doctors are beginning to wise up, and they no longer even require the invasive upper endoscopy exam to confirm a diagnosis. For them, positive serology combined with the presence of a celiac gene is sufficient for a celiac diagnosis. Doctors who follow these updated guidelines obviously are more concerned about the health and welfare of their patients, than those dinosaurs who continue to insist that everyone should continue to eat wheat unless the lining of their small intestine looks like a battlefield.

Anyone who is producing antibodies (not only anti-gliadin antibodies, but anti-TTG antibodies as well), is obviously having an adverse reaction to gluten. Not only that, but the presence of anti-TTG antibodies confirms an autoimmune reaction. Duh! How much evidence do some doctors need? They seem to be more vigorous defenders of the "obligation" to eat wheat, than the Canadian Wheat Board, or the National Association of Wheat Growers in the U. S.

Tex

tlras · Post by **tlras** » Tue Oct 09, 2012 1:01 pm

Since I seem to get a lot more questions answered from you than my doctor, I have another.

Is it possible that my body is attacking ONLY my colon from my past gluten ingestion rather than the small intestine. I have heard over and over how Celiacs have malnutrition cause the small intestines have a hard time absorbing the vitamins/minerals, etc. However, all my blood work from a couple of weeks ago showed no deficiencies. Is it because I've just caught this early on before gluten started damaging my small intestines? Just trying to wrap my brain around these 2 diseases.

I know a lot of my questions will be answered once I read your book. I get it for my birthday on Nov. 3. Can't wait to read it. I still have a lot to learn. Not to mention mast cells and leaky gut.....way over my head right now.

I feel so lucky to have found this forum!

Terri

Post by **tex** » Tue Oct 09, 2012 1:33 pm

Terri wrote:Is it possible that my body is attacking ONLY my colon from my past gluten ingestion rather than the small intestine. I have heard over and over how Celiacs have malnutrition cause the small intestines have a hard time absorbing the vitamins/minerals, etc. However, all my blood work from a couple of weeks ago showed no deficiencies. Is it because I've just caught this early on before gluten started damaging my small intestines? Just trying to wrap my brain around these 2 diseases.

Either of those possibilities (or a combination of them) may be causing your normal lab results. It's not impossible that your colon could be affected more severely than your small intestine (with either celiac disease or MC), but remember that this type of intestinal damage does not occur overnight. Even today, the average length of time that elapses from the time that the first symptoms become evident, until a diagnosis of celiac disease is officially declared, is 9.7 years, according to the latest published research data. Some of that time is due to doctors' ineptness, of course, (since celiac disease usually isn't even on their radar), but much of it is necessary in order to allow intestinal damage to progress to the point where the disease is easily diagnosable by the average poorly-qualified (as far as diagnosing gluten issues is concerned) doctor.

Also, remember that malabsorption problems do not become evident overnight, either. The body typically stores enough vitamin B-12 (as an extreme example) to last for years (sometimes 5 years or longer), so anyone who has a B-12 deficiency has probably had a malabsorption problem for a long time. A malabsorption problem doesn't mean that no nutrients are being absorbed, it just means that they are not being absorbed at normal levels. And normally, we absorb more nutrients than we need, anyway, so it can take a long time for most deficiencies to be noticeable.

Yes, most of this is in the book, and as I also discuss in the book, the medical community desperately needs a reliable way to diagnose not only celiac disease, but gluten sensitivity in general. Their official diagnostic criteria are holdovers from the stone age, and it's high time that they updated their methods.

Tex

tlras · Post by **tlras** » Tue Oct 09, 2012 2:29 pm

You have been most helpful. Thank you as always!!

Terri

fatbuster205 · Post by **fatbuster205** » Wed Oct 10, 2012 3:48 pm

tlras wrote:I had to quit Asacol as well. Made my D worse.

I'm on of those who tested positive for Celiac in my blood work but tested negative on biopsy. I think what I have is considered Latent Celiac disease.

Hi Terri,
I am not sure what my blood results were (I forgot to ask!!

) but I suspect they were inconclusive. I base this on the fact that he wouldn't sanction an endoscopy if I was clearly negative!! However, I am guessing here! But I am delighted that he seems aware of non-coeliac gluten intolerance and is prepared to explore that if the test proves negative for coeliac (I will eventually work out how to spell it!!)

I have been experiencing a lot of RHS pain again and a lot of visits to the loo so I have finally taken some co-codamol because I really need sleep!!

I will say one thing; without this forum I would be really miserable! It is so good having support from such knowledgeable people and the book is amazing! I am about to re-read it for the third time as there is still so much to take in! Anyway I will keep you all posted as things progress! I hoping that the Asacol effect (if that is what this is) will begin to wear off over the next couple of days and give me some relief!

Anne

gluten · Post by **gluten** » Wed Oct 10, 2012 5:35 pm

Hi, A question was asked at a the Columia Celiac Center. " What country has the highest numbers of celiac disease " I was totally surprised by the answer. " Morroco " They do not grow wheat on the sand. The are a poor country and wheat is donated from Canada, U.S and Australia. The numbers are 1 in 22 have celiac disease and does not include the gluten intolerant. The World Health Org. is concerned about the death rate from D in the poor countries. If they given wheat for food may there be a connection. Jon

fatbuster205 · Post by **fatbuster205** » Fri Oct 19, 2012 11:14 am

A quick further update - I have been off the Asacol for about 10 days and Norman has arrived over the last few days - and today only 1 BM!! It looks like it was having an adverse effect on me after all! I still cannot quite believe that things are finally normal!!

Obviously I am still on budesonide but this is the best I have been since April!! It has been a long year! My only concern is that I head off to Andalucia next week for a holiday and I hope I do not get an upset! I am going to be really careful!
Anne