Correspondance with my GI

Lesley · Post by **Lesley** » Mon Jan 30, 2012 7:05 pm

Subject: Barrett's Esophagus:
I haven't received an answer to my last email, but Dr. Steindel gave me the answer. I always hope we find an easily taken care of explanation for a problem, but it seems that it's not mast cell.

Are you my doctor now? Or is it still Dr. Gardner? Is that why I am having so much trouble getting an answer?
I have no problem either way. What I needed was to get some answers about diet and care.
Do you have ideas other than those online on treatment for Barrett's esophagus? Doesn't it has to be watched?

It's interesting that the Mayo clinic is now saying that diet IS an important part of treating MC.
And many doctors everywhere seem to be talking about gluten and the connection to the symptoms one gets with MC, i.e., bloating, pain, gurgling, body aches, fatigue etc. as a result of GLUTEN SENSITIVITY.

(can you tell that I have lost patience? Too tired to deal with this any more!)

His reply (weird use of capital letters)
You Had biopsies of the esophagus 2006, 2008, 2010, 2011 and none of these showed Barrett's. There is A 14 fold increase in risk for microscopic colitis if A person has Celiac disease , but all of your Duodenal biopsies do not show celiac. It is true That even if A person does not have celiac that gastrointestinal symptoms, As well as sense of well being And level of function may improve on a gluten free diet- the Reason has not been established. I have ordered a blood test More sensitive for histamine being elevated other than in mastocytosis. You can go to any lab to have it done. You may be one of those individuals that Do feel better on gluten free diet, so continue it if it seems to help. T Teller

Mine:
I had bowel biopsies done at the same time, none of which showed the problem, even when gastroparesis was proved present.
I thought that, just as MC can develop almost overnight when set of by some event, since the pain on eating started in the past few months, Barrett's might be similar.

I am 100% sure that gluten affects me adversely. My son is the same. Much better off gluten, as are the 1000+ people on the support forum in which I participate.
However, most of us seem to be sensitive to a whole range of foods other than gluten. Most of us cannot eat the casein in dairy products.
I react to corn, soy, rice, eggs, almonds, fowl (no chicken soup), kale, cashews, most fresh fruit and vegetables and more. As soon as I eat something that is going to cause discomfort, pain and diarrhea I feel it. I keep discovering more foods that cause a reaction.
Others have different sensitivities, though gluten is universal to all of us.
Interesting!

I wish he, and other doctors would find all this interesting. Attitudes might change if they did.

draperygoddess · Post by **draperygoddess** » Mon Jan 30, 2012 9:23 pm

At least he's answering you. My GI and I are no longer on speaking terms.

Lesley · Post by **Lesley** » Mon Jan 30, 2012 10:29 pm

My previous one (Gardner) and I are no longer speaking. You can see my not so gentle prod to get a reply form this one. My doctors are loving me about as much as I am them right now.

Noodler · Post by **Noodler** » Tue Jan 31, 2012 3:10 am

Lesley

I have multiple sensitivities to foods measured by IgE and very high levels of lymphocytes in the small and large intestine. I'm interested in what you say about gastroparesis as I have this too and massive amounts of pain.

Lately there has been some excellent research accomplished which shows that lymphocytes damage nerve cells and muscle fibres in deeper layers of the gut. A team in Sweden has shown that patients who have intraepithelial lymphocytes, like I do can also have myenteric ganglionitis which, in layman's terms means the neuromuscular layers under the mucosa are affected by lymphocyte inflammation which paralyses the nerves and leads to dysmotility like gastroparesis.

It is interesting to see from the study that some patients had celiac. It also explains that lymphocyte inflammation can run deeper in the gut and cause more difficult problems. They propose calling the condition Lymphocytic Epithelioganglionitis which is quite a mouthful but describes the more widespread lymphocytic inflammation they have observed.

I can't get hold of a full paper but they have written a few on the subject
http://www.ncbi.nlm.nih.gov/pubmed/19413636

draperygoddess · Post by **draperygoddess** » Tue Jan 31, 2012 9:01 am

Now, that is interesting! Kind of proof that all this stuff is connected, isn't it?

Stanz · Post by **Stanz** » Tue Jan 31, 2012 6:17 pm

As well as sense of well being And level of function may improve on a gluten free diet- the Reason has not been established

Seriously, how do these people go to work every day believing that they make a difference? Isn't that what most of us strive to do?

I'm just a lowly caterer, if I know I am going to be feeding someone w/a known food intolerance I do my homework and I'm not PAID to do my homework.

Are our doctors just a bunch of elitists prigs who have no real idea that they still have things to learn?

Lesley · Post by **Lesley** » Tue Jan 31, 2012 8:49 pm

Don't you love the "may improve" Connie?
I also HATE the way he addresses "level of function" as something reduced to a phrase he can throw out. So darn supercilious!

Noodler - I have no idea about the # of lymphocytes in my digestive track. I know that when my last GI did my last scopes (from the top and the bottom) and took the biopsies that confirmed MC he saw there was undigested food in my stomach, so I was invited fora a radioactive omelet (YUK!) at the hospital, and to lie on a gurney for 2 hours while a machine watched it go down. It took a LONG time to do so, and lingered in my stomach for way longer than it should have.
It hurts like hell to eat. Burns from swallowing all the way down, and stomach aches immediately after. The only reason I do is is that the burning is worse when I don't.