What Else?

[judy05]

Andrew, I have to agree with bmorrow, I was diagnosed with Barrett's Ring around the Esophagus, it has to be checked every year because it can turn to cancer. I think everyone should have at least one Endo and one Colonoscopy at least once in their lifetime. You might find something other than Celiac causing your problem. I didn't want to got through that either but I'm glad I did. Go for it, what have you got to lose?

[baggotlane]

Excellent and helpful replies. My thanks to each of the last four contributors here.

I'll do the endoscopy since other things could be found using it. However, the instructions from the doctor were to get on a glutenful diet right away in preparation for next week. That does not make me feel his primary reason for doing this is to look for other items. I will try to stall things for a while. I'll also pursue and discuss with him the Enterolab options.

Due to complications a few days ago diarrhea has returned. I've got to do something! There were no indications of any malabsorption and all the blood, sigmoid and other tests, including tTg indicated absolutely nothing abnormal. So far, the only thing wrong is me complaining of pains everywhere, tiredness and a very unstable stomach! I need to find something to grab on to. Just hope an endoscopy will not cloud the cause.

Andrew

[jknnej]

Although I'm certainly not a dr, I would get the test. I, too, didn't get one at first but am still going to make sure there isn't another problem in my stomach.

It certainly couldn't hurt and I've heard the test is quite painless.

[baggotlane]

I thought I should add here an update. My doctor has decided not to proceed (tomorrow!) with the endoscopy. Instead he has directed me to return to the full gluten diet for two months or more. I have told him that if I get violent diarrhea something will have to be done.

To be frank, the gluten-free diet is not altogether successful. It did help initially, curing diarrhea. But, the other symptoms (wind, acid bloating) never went away in 7 weeks. And, for the past two weeks diarrhea has returned, even getting a bit worse. Suspicions run to other foods and antigens or to causes that lie outside the realm of celiac disease. A cancer, a spinal nerve injury etc., might provoke stomach symptoms like this. I am getting a bit more concerned. But, for now, it is going to be an adventure to return to the non gluten-free world. Not a single meal away from home. At least it will let me travel again.

Andrew

[KaitiUSA]

7 weeks is not enough time to get rid of all the symptoms. It took me 3 months to get alot better and then more like 6 to get back to normal. I think that if you noticed even a little bit of a change then that should be a good sign especially so soon.

Whatever you decide though I hope you find out what's going on and get to the bottom of it.

[baggotlane]

You're right. But he maintains that doing the gluten-free thing right may not be adequate. Better to verify it is celiac disease and not something else and then restart on, not just a gluten-free diet but a diet that goes from the really simplest of ingredients, eliminating gluten, lactose, etc.

It does not sound great but the alternatives are not great either. I am losing ground and weight now.

But thanks for all your words of advice. I will maintain interest by looking in at various forums in the meanwhile.

Andrew

[Guest BellyTimber]

Andrew,

Hoping things work out for you and that your weight loss isn't too severe.

Pardon my raising a few things again to check whether I'm getting your story right, here goes:

You were diagnosed with celiac disease on some blood tests and a biopsy, but your doctor is changing his mind because you are still ill after 7 weeks?

This is in my opinion too early to change mind, in fact I think doctors shouldn't withdraw diagnoses. I'm still feeling dubious after two and a half years in fact now is my worst episode of "runs" ever. Many who post on this forum are not totally fit after years, so it's best to not worry about feeling below par per se.

Why did we go to the doctor in the first place? For me it was the acute abdominal pain, someone has called it "end stage celiac disease". Some go to the doctor in other circumstances and then it is up to the doctor to give extra explanations as to the significance of the diagnosis. In my case the abdominal pain and certain nerve symptoms went away and only come back if I have a "gluten accident".

The latest from the UK on biopsies is, it should be scheduled straight away (days) in acute cases (this is rarely done though) but if a person is being checked up in other circumstances then they should either stay on the gluten diet till they have it, or if they have been gluten-free they must have at least 10 grammes of gluten (not just food containing gluten) every day for 6 weeks. In my case the doctor forgot to send me for one at all and it's not safe for me to have a gluten challenge of this kind and that is causing complications in the UK, but many forum contributors haven't had one and aren't going to have one, it's each of our choice.

Biopsies in gluten ingesting cases were supposed to show up flattened villi but of late, experienced testers have observed more subtle abnormalities indicating celiac disease.

A second biopsy scheduled for many months into the gluten-free diet was often employed in the past to check that the villi had improved, especially if Codex Wheat bread was being eaten. The second (gluten-free) biopsy is less often employed in the UK nowadays.

I think my doctor got confused about biopsies.

Now all the discussion so far has been about villi but celiac disease and celiac disease-like conditions also implicate many other parts of the body including pancreas and spleen. The pancreas is a part of the body that needs guarding against things that are wrong for it as it doesn't regenerate easily: abstinence from alcohol is for instance a parallel case in point that may not apply to most of us but works in rather the same way so I understand. There is an auto-immune angle to this.

Keep us posted how the elimination procedures are going.

If you want to check out dairy I was recommended the following (by a nutritionist not doctor):

It takes about a month (I sped that up to about 20 days but it may be better not to hurry overly).

First have 5 days with no dairy. See whether you are better, If so, then introduce live yoghurt (with live cultures in it), the cultures may have turned the lactose into something else so you may not have an intolerance.

Then be off dairy again a few days then repeat the process with each of these in the following order:

- butter (little lactose or casein)

- cream

- soft/cottage cheese

- hard cheese (has additional byproducts that may not agree with everyone)

- neat milk

That is because of ascending order of concentration of lactose.

Some say goat's or sheep's milk are weaker in lactose so these may be an option for your future diet depending on your findings.

Some people with celiac disease have a temporary lactose intolerance - a matter of months or maybe a year or so - the damaged part of the villi is essential in good dogesting of lactose. Some people are sensitive to the casein (a protein) in dairy products and that probably doesn't vary over time in its underlying reality.

Apparently casein and gluten are among the most complicated things people eat and are thought to be relatively unnatural for many people - the bottom line is human diversity.

When we are ill the positive side is, our body is talking to us and it is sometimes saying something like, "give me a break". Also, it will speak a diferent language to us at different times. Why didn't it tell us before now?!?!?!

Don't forget your green veg for the minerals. "Spring greens" are delicious at this time of year and I pour the cooking water into mugs, I find it a delicious drink (slightly cooled).

[baggotlane]

Thanks for your detailed and helpful reply. This business is a bit confusing. You got the facts right. But, I am not yet doing eliminations. The doctor wants me first back on a glutenful diet. Two months from now there will be an endoscopy biopsy. I hope I'm still around for it!

In fact, after one full day back on gluten I am surprised. I had anticipated disaster. But, no - I see no change! It's not better and it's not worse. Which is not to say that I am fine. Far from it. But at least I am not having violent diarrhea and I am able to eat. But, after getting used to being gluten free it's quite a change and if I have to return that is going to be a major readjustment.

This whole thing is a puzzle. And it's been going on a a long time. You may be right about the pancreas ? After all these years doing nothing for me perhaps the pancreas has now decided to turn negative. We'll just have to see.

I am making inquiries about Enterolab. But, even if those tests were positive I think the doctor would still want to do the biopsy. And, can you blame him? If they are negative like everything else so far then it will certainly be the biopsy time. And if that is negative who knows where we are?

Andrew