What Else?

[baggotlane]

Hi All!

I need some helpful advice. Over a month ago I was diagnosed with celiac disease. I have coped with gluten-free diet and that has eliminated diarrhea. So I feel much better. However, none of the tests (blood or biopsy) showed anything positive and the stomach wind and indigestion has not cured itself, at least not yet. Is it too early to ake other action? Could there be another factor? I did experience some trouble with tortillas, but not other forms of corn. It was suggested to start eliminating foods to see.

Between getting on this gluten-free diet, being Type 1 diabetic lifetime, what else is out there?!

I'd really appreciate some advice.

Andrew

[KaitiUSA]

All symptoms for some people do not go away that fast. I didn't start really feeling better until the 3rd month and it took a few months after that to feel normal again.

And are you sure you are completely gluten free? There are even products like shampoo that can get into your mouth easily that should be checked.

There could be possibilites of other foods giving you a problem. Have you considered getting an allergy or intolerance test done?

[pixiegirl]

Hi Andrew....

Well its certainly a change when you have to go gluten-free... I try to look at it not from the standpoint of looking at how awful it is or dwelling on the things I can't eat but on how much better I feel and how healthy I'm going to be.

I'm no expert but I think an elimination diet works the other way (although the name is misleading).... not that you start taking things out of your diet... because that doesn't really nail down the foods that bother you... for example lets say you are eating, corn, milk, beans... and you are having problems... you take out corn and you are still having problems... that doesn't nail down if corn does or does not bother you... it does nail down that "something else does as well"

The way an elimination diet is done is you start off with very few things you know you can eat. (I'm doing this right now so I can really relate). For me its chicken (roasted, but plain, no spices or even oil) white rice. Then I added in potatoes and I had no reaction, then I added in banana's, then applesauce. I add a new food in every few days..... and if after a few days I'm still feeling fine, I assume that food agrees with me. You can't however eat white rice and assume that all rice products are ok because I can eat plain rice but a lot of products with rice in them (lundenburg farms rice chips for example, plain I can eat, barbeque I can't) still bother me. Its a fairly long and drawn out process but for me its worth it.... I just don't want to be sick and fighting digestive problems all my life. I can eat Ben and Jerry's vanilla ice cream so live is good!

Its an adjustment to change the way we have eaten all our lives and its certainly not easy to keep it up away from home, but I still try and keep a positive outlook, its just food and as enjoyable as eating is... I feel we are pretty lucky to have a disease that is managed by just diet.

Best of luck to you!

Susan

[celiac3270]

I need some helpful advice. Over a month ago I was diagnosed with celiac disease. I have coped with gluten-free diet and that has eliminated diarrhea. So I feel much better. However, none of the tests (blood or biopsy) showed anything positive and the stomach wind and indigestion has not cured itself, at least not yet. Is it too early to ake other action? Could there be another factor? I did experience some trouble with tortillas, but not other forms of corn. It was suggested to start eliminating foods to see.

Between getting on this gluten-free diet, being Type 1 diabetic lifetime, what else is out there?! 

Hello and welcome

Okay. First, were these tests done prior to or after going gluten-free. If after, your results could have been thrown off from no gluten in your system.

I think it's a little early to strongly suspect something's wrong--it could take five months to feel better--but if you'd like to investigate other problems, that's probably best, anyway.

The type 1 diabetes could very possibly have come from untreated celiac disease as that is a symptom.

[kaylee]

Hi Andrew,

figuring out exactly what to eat so you feel your best AND have enjoyment is not necessarily and easy thing to do!

Apart from the other suggestions, I'll just mention that dairy products in general appear frequently to be not well tolerated by people with celiac disease, especially in the early stages of the new gluten-free diet when the intestines are in a process of healing. Some people find they can go back on dairy with no problem 6 or 12 months later, others discover they're just better off without it. In terms of my own experience, taking gluten out of my son's diet made an initial very positive impact, but full recovery occurred only after we also removed all dairy products. I'll also repeat what others have already said: really feeling your best may simply take time, even if there are no other real problems. Being followed by a good doctor is obviously important (knowing what to test for, given whatever your set of symptoms is), but seeing a dietician (again, someone who has experience with your 2 conditions) can also be pretty helpful not only in terms of making sure you're getting the vitamins and whatnot you need, but also to make suggestions of ingredients to use that you may not have thought of. You'll also find lots of food suggestions in the cooking section here and you'll figure out what works for you in terms of ingredient substitions over time (we have had to learn to do lots of substituting due to a wide array of intolerance!). One foot in front of the nest will get you on a pretty good road!

Best,

Kaylee

[baggotlane]

Thanks for the replies from everybody.

The tests were done within two weeks of going gluten-free. Could that change the blood-test responses also?

One person indicated there was an allergy test that could help smoke out a non gluten-free cause. I have never had allergies to anything except to bee stings thirty years ago but not since. Any idea of what to ask for for such tests? They've got to be more specific than 'any allergy'.

Elimination diets seem to be very tricky. I've carefully monitored everything (yes stamps and shampoo - but thanks!) and wonder where to start. Going milk free I did for two days. no changes, but only for two days. Would you need months to see? If consistent with the recovery time from gluten that would seem to be necessary. Right or wrong?

Andrew

[ianm]

Isn't Type I diabetes the type you are born with and Type II the kind that developes later in life as a result of poor health and diet? That is what I was told by a doctor once because I almost became a Type II diabetic.

[baggotlane]

No, not quite. Some people are born with Type 1 but most acquire it later, often as juveniles. A few even acquire it when adults.

Type2 is a different disease, resulting from insulin resistance and frequently resulting from lack of excercise and/or excess weight. It is often called adult-onset diabetes, which is indeed apt for most people but a few children do get it also.

Type 2 can often be controlled by good exercise and diet while Type 1 cannot be cured unless you get an implanted pancreas and t survives, both difficult to achieve. Type 1 is a lifelong business, requiring daily shots of insulin and/or continuous infusion from a pump.

[Emme999]

Andrew -

Hello there I think that Kaylee is absolutely right about the dairy stuff. There's a really, really, really wonderful write up on food intolerances and how difficult it is to detect them at Open Original Shared Link It talks about how long the food stays in your system and how long it can take for problems to show up related to the foods you have eaten.

Check it out and see if it helps If you want to have a food allergy test - one of the best is the ELISA test. It checks for IgG and IgE antibodies. It's also relatively inexpensive (compared to other blood tests for allergies) - I had a 96 food panel done for about $165. If you are interested, you might have more luck finding a naturopathic or holistic doctor to performs this test - as the standard medical community doesn't yet use it, for some reason.

I had the test done and found that I am *severely* allergic to dairy (plus eggs, plus sesame seeds). Once I cut out the dairy - and this was *before* I found out about celiac - I was able to get rid of a lot of stomach troubles, bursitis, and some of the fatigue.

Of course, I just started the gluten-free thing today so I've still got lots to do But getting rid of dairy helped me enormously. And from various articles that I've read - you need to allow yourself 2 weeks for all of the dairy to get out of your system. You might want to just try that and see how you feel

Good luck!

[Peaches503]

To clear up the diabetes type 1 question, it is like celiac. You are, in fact, born with them, and they may or may not become "activated" later in life. For instance, someone may be carrying the gene for them, but never actually get the disease. I know this because I have done extensive research projects on diabetes type 1, and my sister in law does research for the ADA for a living. Any more questions, just ask!

-Peaches

[baggotlane]

Thanks, Michelle. I'll start with dairy (instead of corn as I had trouble with one corn product). The blood test did Ige & IGG - negative. I will look into the 96 food panel test. You're right, it will probaly not be done by my doctor. But I think it is important. I cannot see much correlation between what I eat and how I feel. I am just getting stomach churning and wind, going 6 weeks solidly gluten-free. The gluten seems to be important and stoppping it helped a lot but, not everythng. I do not eat eggs. So, I'll start on dairy - two weeks you suggest.

Andrew

[baggotlane]

Peaches,

Your statement that Type 1 diabetes is purely genetic (as 'you are born' with it) would be disputed by research at the University of Maryland. Let me quote from them "Genetic factors cannot fully explain the development of diabetes. Over the past 30 years, a major increase in the incidence of type 1 diabetes has been reported in certain European countries, and the incidence has nearly tripled in the Northeastern U.S. If genetic factors were the only cause of type 1 diabetes, such an increase in cases would take at least 400 years."

In view of this I'd be interested in hearing/reading your evidence that the Type 1 diabetic is always a person born with the trait. This is fascinating stuff.

Andrew

[Peaches503]

Careful, do not misquote me. I never said that it was "purely genetic." I am aware that there are other factors "affecting" diabetes, however, from the research that I am aware of, this is the only way I have learned that diabetes may initially be acquired. For instance, what I am saying is like, you cannot pass it on unless you have direct contact with a person's blood that has the gene. What I'm simply saying is you have to at least have the gene for it as part of a way of developing type 1. Type 2 is a different story. Can you see what I'm saying? I'm not saying that research has not shown that there are other contributing factors, but without the gene for type one, a person does not simply "develop" type 1.

[baggotlane]

This is a good topic, although it is starting to drift away from what my initial questions were. Anyhow! Yes, I can see the difference. What I would really like to know is whether in all Type1 persons tested the responsible gene had been found. And whether for people who developed Type 1 in as juveniles, let us say, they had been shown to have the gene at birth. That would be definitive.

Andrew

[Peaches503]

I'm not sure about all Type 1 diabetics, but in my brother's case, he DOES have the gene for celiac, but he does not have celiac disease. He only has type 1 diabetes. However, it is suspected that celiac disease and Type 1 stem from the same gene. There is still research being done on this.

[KaitiUSA]

Yes, I have heard the same gene that causes celiac can cause diabetes. I know that if you are celiac and do not follow the diet then you are prone to getting diabetes. Whether you are predisposed to diabetes or not I do not know.

[baggotlane]

Let me try to re-direct this thread, if you dont mind. It has become more investigative on the subject of diabetes - a great and important topic but it might be better to start a separate discussion on that one. Let me try to return to the original one - where do I go from here. All tests, blood, stools and colonoscopy show negative results, indicating to signs of celiac disease. Yet, nearly six after I put myself on a gluten-free diet I have managed to eliminate some, but not all, symptoms (exclude the last day, when they re-appeared). The symptoms included diarrhea, an important one.

The question now is whether doing an endoscopy is worthwhile. After six weeks gluten-free I am told that the endoscopy test is no longer useful as the effects are masked. Is this true? If so, what would you recommend?

[Emme999]

Andrew,

From all that I've read (and been told by my doctors) after 6 weeks gluten-free, the biopsy would not be accurate. Unless you want to do a "gluten challenge" (eating gluten at every meal, and in snacks too) for a few weeks prior to having a biopsy, I don't think it would do you any good.

If I were in your position, I would have a tTG blood test done. The tTG is extremely sensitive. This is from the book "Dangerous Grains" (my fav. book to quote! )

"The tTG test usually identifies about 98% of those who have celiac disease, and it is a very specific test that can be used to rule out celiac disease in 95% of patients. This test appears to be superior to endomysium antibody testing, not only because it is less costly but also because it is a little better at identifying celiac disease and because interpretive bias is reduced by the use of computer scanning."

I am pretty sure that the tTG remains accurate regardless of your diet - you could ask your doctor, or better yet -someone else who knows for sure might add a knowledgeable reply soon!

Best of luck to you

- Michelle

p.s. I want to add that I would *not* rely on gene testing. According to a gastroenterologist who gave a presentation at our local gluten intolerance group - the genetic testing is only valuable in showing that you do *not* have celiac disease. The two genes that are tested (sorry, I can't remember their names right now) are actually quite common - all people with celiac disease have them, but not all people who have the genes have celiac disease. However, (if I understood him correctly) if you do not have these genes, you do not have celiac disease.

Anyway, the genetic testing seems kind of silly to me considering the accuracy of the tTG.

[KaitiUSA]

Yes it is too late for a biopsy and if you want a biopsy now experts recommend 3 months on gluten before any kind of testing. The biopsy would be worthless at this point.

Damage could have healed by now causing negative results. What blood tests did you have done? There are some specific ones for celiac that the basic celiac panel will not cover.

Listen to your body. It seems like you had some problem with gluten to have eliminated symptoms so quick. I would stick with it.

Good luck and let me know if I can help you at all

[baggotlane]

You know - my doctor's office just called. They want to see me next week for an endoscopy! Does not sound right, does it?

They have tried a full battery of blood tests. I have also had a separate set of tests for other blood disorders, deficiencies etc. All tests were negative. The doctor's office said the endoscopy is the only way left. Gluten free for 6 weeks now has, until two days ago, gone. However, bloating, churning a heartburn have not. I am now uncertain as to what I should do. It sounds like a no-win situation. if the results of a biopsy are worthless after a week of gluten - I am not going back on gluten until I feel it is worth it.

I am ready for alternative suggestions.

Andrew

[KaitiUSA]

Have you considered an Enterolab. They say you do not have to be back on gluten for the test. Go to www.enterolab.com to find out more info. It is not widely accepted by the medical community but it is a great test and they are onto something.

[baggotlane]

Thanks to all for helpful replies. My doctor's office confirmed that the tTg tests were negative. In fact they were far below the threshold level. So, everything to date gives no indication of celiac disease, except that going gluten free rescued me from diarrhea until an unfortunate incident a few days ago occurred.

As of now I am schedued for endoscopic biopsy next week and I am going to resist it because I I am still on a gluten-free diet. But, if anyone there has had a similar quandry, I'd like to hear.

Andrew

PS I am investigating Enterolab. Comments on its viability and reliability would be welcome. In fact, anything would!

[KaitiUSA]

Since you have no indication of celiac disease then you could have just a gluten intolerance. Your body is telling you there is a problem with gluten so stick with what is right for your body. Tests and doctors can't tell you what your body can.

Enterolabs I find to be an awesome thing. Some doctors "accept" them but it is not widely accepted for diagnosis. I think it will be relied upon heavily in the future. I did not have one done but some people on the site have and I have heard nothing but awesome things. I would highly recommend it. Seems very reliable

[Peaches503]

I also have not had Enterolabs tests done, but I think that is the test that my doctor is ordering for me. If he feels it's worth using Enterolab to test me, then there must be something to be said about the accuracy, reliability, and quality of these tests. . .

[bmorrow]

Andrew,

If I were you, I would still have the endoscopy, because there could be something else other than Celiac that they might find. I had severe Gerd and inflammation in my stomach and esphoagus, and wouldn't have known about this without the EGD. I had negative blood tests and an inconclusive biopsy for Celiac.

I have posted previously about this, but I think that I will do it again. I had the Enterolab tests and tested positive for gluten sensitivity and had moderate malabsorption. I was confused about the reliability of these tests, but went on a gluten-free diet anyway. My GI felt that the tests were accurate and more sensitive then the blood tests, and he thought that since I had the inconclusivie biopsy that I had gluten intolorance and possibly Celiac. Eleven months after I went on the gluten-free diet I was still having chronic diarrhea. Many of my symptons were helped by the gluten-free diet, but not the diarrhea. My GI referred me to a GI at Baylor that does research, as well as, has a practice. He diagnosed me with Celiac and microscopic colitis, and also is treating me with Colestid for the diarrhea. This doctor has worked with Dr. Fine and told me that he has studied Dr. Fine's tests method and is very confident in his test results.

Good luck !