Bewildered And Confused

[Woobet]

I am a self-diagnosed celiac and I have been gluten free for one month now.

Since childhood I have been suffering from many diseases, the majority of which are digestive problems,.. kidney, bladder, and breathing problems, fatigue, depression, lips always being dry, hair loss, problems concentrating...Some have never been diagnosed. I have always been under weight and now I am extremely under weight (I am 5 ft 10).

About 12 years ago I was diagnosed for duodenal ulcer and had a bypass surgery. As a result, I developed even more problems. (Lactose intolerance and dumping syndrome). When I heard about celiac disease a little more than a month ago, I was exhilarated, because I thought I found the root cause of my life long (34) health problems. I searched about celiac disease on the internet, and this forum has helped me very much. As soon as I embarked on gluten-free food, I saw encouraging results. The 'D' subsided, though it didn't disappear completely and I had somehow managed to minimize its severity even before I learned about celiac disease.

Though, I now live in Canada and have been seeing several doctors and specialists for the past 7 years, none of them ever mentioned the words "celiac" or "gluten" to me. What is even more surprising is that I had somehow figured out that bread was one of my worst enemies and I had told this to every doctor, but none of them ever mentioned celiac! I only recently heard about celiac on CTV, just as I had decided to see a new family doctor. The new doctor, though very good otherwise, would not accept my plea to have me checked for celiac. I have told him that I am now on gluten-free and I have seen encouraging results and he says "that's good, why would you want to be checked then?"

Now, my problem is that the little improvement I saw for the first days since I was gluten-free, is now diminishing. I was never completely healed from the duodenal ulcer (which I suspect is because of the undiagnosed celiac disease) and as a result, not only do I have to avoid gluten from my diet, I also have to avoid many other foods that upset my stomach. In addition, though the dumping syndrome caused by the bypass surgery has greatly improved in the past 12 years, I suspect that it also may be the cause for many of the foods that my stomach cannot tolerate. The long list of foods that my stomach cannot tolerate has increased since I have been on gluten-free. I can no longer tolerate lactose free and/or skim milk, almost all gluten free packaged food (since they have too many chemicals), spicy foods, almost all fruits, all drinks (except pure water).

I suspect that I have chemical intolerance which is now more pronounced than ever before. It's has been many years now since I was able to consume orange juice or any other juice or soft drink. The gluten free bread I buy from the store was only good for the first few days. Now, even that makes me tired after eating it (though no 'D') because of some of the ingredients in it. I switched to plain gluten free bread with natural yeast. And now yeast is my problem. As a result, I tried avoiding bread from my diet for a day, and I almost fainted because of lack of glucose (I guess). I have now started backing my own bread. Again, that was only good for the first few days. I found out that backing powder is a problem for me. In order to avoid that problem I am using less than the recommended amount of backing powder in most recipes.

Before going on gluten-free, I used to chew my favorite flavor from the "Extra" gum brand. I checked recently and they told me that it is a gluten-free product. But, these days, even that has become a problem with me. I just gave that up too and I feel slightly better since.

In retrospect I now see that I had been gluten intolerant since childhood and all my other health problems were directly or indirectly linked to it. I think that because it has been misdiagnosed for all my life, the celiac disease I have now is very sever, and I am afraid that the recovery will not be quick.

I check my weight frequently and it fluctuates every day. Some times I gain a pound or so, only to lose it the next day. I have not been able to pin point the exact cause for it. What I think, though, is that the villi in my small intestine must have been damaged so much that it may take a long time before I see any true improvement, apart from the

[happygirl]

This thread slipped through the cracks and was not originally pinned. Now that it is, I'm sure that you'll get some responses.

[one more mile]

If you have had gastric bypass you need the iron. I live with someone that eats any thing they want but with out the iron

they get very tired and pale.

Good luck I can relate to your problems. I have been labeled a hypochondriac for years. And for me also it seems that once I get a handle on one thing, another pops up. You just have to keep trying. Please do not give up.

One more mile.

[Woobet]

If you have had gastric bypass you need the iron. I live with someone that eats any thing they want but with out the iron

they get very tired and pale.

Good luck I can relate to your problems. I have been labeled a hypochondriac for years. And for me also it seems that once I get a handle on one thing, another pops up. You just have to keep trying. Please do not give up.

One more mile.

Sorry, but I meant gastrectomy with Billroth 2, not gastric bypass. But I guess, the overall effect is similar. No, I will never give up. But I hope I will see the results of my efforts sooner than later.

Thank you and hope to get more help from people who have gone through a similar situation.

[Welda Johnson]

Dear Woobet,

I am so sorry for what you have had to endure. I am 63 and have been challenged with Celiac symptoms since age 8. All those doctors that I visited, searching for help with asthma, bronchitis, pneumonia, depression, digestive upsets, etc. etc. etc. never mentioned Celiac or gluten intolerance. None of the specialists to whom I was referred ever mentioned Celiac or gluten intolerance. Sound familiar? In my 30s I finally began elimination tests on myself, and by my 50s had learned not to touch any grains or any milk and dairy. By my 60s I learned to stay away from all grains, all milk & dairy, egg whites, yeast and all meats. I now eat vegan--fruits, vegetables, corn, beans, etc. I am here to say that if you continue putting your own health first, surely you will find the diet that works for you. I eat fruits only for breakfast, salads for lunch, and starches thereafter, as much of anything that I want, and my weight is healthy for me. I am wishing you good health and happiness. Keep on the path of your own well being. You will be glad you did. Welda

[Rya]

I can no longer tolerate lactose free and/or skim milk, almost all gluten free packaged food (since they have too many chemicals), spicy foods, almost all fruits, all drinks (except pure water).

Concentrated carbohydrates (fruit) are renowned for causing dumping, unfortunately. Do veggies have the same effect? Also, lactose free milk isn't completely lactose free is it? I think it still has residual lactosi (I made that word up) floating around. And drinks either have sugar (concentrated carb) or artificial sweetener (not well tolerated by those with GI problems of any kind).

I suspect that I have chemical intolerance which is now more pronounced than ever before. It's has been many years now since I was able to consume orange juice or any other juice or soft drink.

Juices - concentrated carb. Soft drinks - see above about drinks. Also, caffeine is probably not nice to your intestines.

As a result, I tried avoiding bread from my diet for a day, and I almost fainted because of lack of glucose (I guess).

Hypoglycemia is a real issue if one does not consume carbs. Especially if that person probably doesn't have extra carbs stored up.

I have now started backing my own bread. Again, that was only good for the first few days. I found out that backing powder is a problem for me. In order to avoid that problem I am using less than the recommended amount of backing powder in most recipes.

Some baking powders contain aluminum while some do not. Have you looked into that? I know for certain Bob's Red Mill is aluminum free, but you can check the label. If you see aluminum even as part of one word, it means it contains aluminum.

Before going on gluten-free, I used to chew my favorite flavor from the "Extra" gum brand. I checked recently and they told me that it is a gluten-free product. But, these days, even that has become a problem with me. I just gave that up too and I feel slightly better since.

My most educated guess would be sugar alcohols...not well tolerated, again.

I check my weight frequently and it fluctuates every day. Some times I gain a pound or so, only to lose it the next day. I have not been able to pin point the exact cause for it. What I think, though, is that the villi in my small intestine must have been damaged so much that it may take a long time before I see any true improvement, apart from the

[Woobet]

Dear Welda,

Thank you for sharing your experience with me. Your situation seems similar to mine. I began elimination tests on myself more than 20 years ago out of necessity on several kinds of food, most of which are acidic (such as fruits) and spicy, and some are dairy products such as cheese and butter. What bothers me though is that in a little more than a month since I eliminated gluten from my diet, I have become less tolerant to many foods that I did not find too bothersome before. Simple example: I used to enjoy cooked broccoli, cauliflower, spinach, kale, cabbage etc in my meals. Now, I cannot eat any of these unless they are uncooked, because during cooking (it seems to me) the acidity in vegetables increases and that bothers my stomach (probably not totally related to celiac, but I wonder why I should be more intolerant to these things now than before.) BTW, when did you know about your celiac status and when did you start eating gluten-free foods? Did it help you improve on your list of food choices or did it worsen it? That insight will definitely help me with what I should do and expect in my situation.

****************************

Dear Rya,

Thank you for your detailed look into my experience. Some fruits such as orange and lemon are a killer to me. Veggies don't have as bad an effect on me, but they are still unhelpful to say the least. I eliminated lactose milk after my doctor told me about lactose intolerance about 7 years ago. That seemed to help for a while, but I knew that I still had problem even with lactose free milk. Then I started to experiment with skim milk (and eventually skim cheese) about 2 years ago. Again, I found out that skim milk was not the answer, and I switched to lactose free skim milk (I never knew until a few months ago that they had both lactose free and skim milk in the same product.) That I thought was going to be the answer for my problems, but even that didn't work. A few weeks ago I learned that casein (a protein found in milk) is similar to gluten in its chemical structure and on some celiacs it has the same effect as gluten. So, that's where I am now. No milk products.

The backing powder I use is Indigo Packaged Goodness. Actually, I am glad you pointed out that, because even though there is no aluminum in it, now I suspect that the cream of tartar mentioned as on of the ingredients may be the enemy. Previously, I had used Kraft's Magic Baking Powder and didn't bother me. The only reason I abandoned it was because it doesn't specifically say "Gluten-free." Now, I am going to switch back to it.

I will follow your suggestions.

Thank you.

Woobet

[MissyH]

Woobet..I totally sympathise with all that you are going through..

You think you may have an answer and then something else crops up.

This is only a suggestion..but I will tell you how it all happened for me..it might help you.

For one thing..as we all know..stress affects your stomach..

I did the 6 week (which is the time we are given) of eating 4 slices of bread a day running up to my biopsies on 6th January in 2003.

My results came back three weeks later as negative.

At that same time my dad had been in hospital since the previous November. At the same time as I was given a negative result my father's treatment was stopped and he was given about 3 days to live.

This turned into 12 days..and was awful to witness.

I came off gluten..but could barely eat with all the stress..for about 6 months the only foods my stomach could tolerate was ham..and plain rice...that was it..three meals a day every day.

I was in bits and no better..I chose to go and see an accupuncturist..the lookk of kindness he gave me when I walked in there turned me to tears and everything that I had been going through came out...even though I only went for help with my stomach.

He simply said..that is far too much stress (there was other things going on over that time as well)..your stomach has just shut itself down..it being your weakest part and the one which 'reflects' the stress in you.

I saw the same guy for 6 months..and after three months I could eat other foods withut reacting..it took work and time..and trial and error..but it helped me to eat again.

With all that you have been through I wouldn't be at all surprised if the stress of it all is affecting you.

My thoughts go out to you.

[Woobet]

I came off gluten..but could barely eat with all the stress..for about 6 months the only foods my stomach could tolerate was ham..and plain rice...that was it..three meals a day every day.

.....and after three months I could eat other foods withut reacting..it took work and time..and trial and error..but it helped me to eat again.

With all that you have been through I wouldn't be at all surprised if the stress of it all is affecting you.

My thoughts go out to you.

Thanks MissyH. I am very greatful for your help. Yes, it helps to know that things will improve despite what I am going through regarding my health. I hope and pray that I will one day post my own message of hope and recovery from celiac to encourage others.