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Trillian

Please Tell Me About Your Other Intolerances

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I've heard about other intolerances mentioned here and there on this forum. Also, I've heard that they just kind of appear after you've been gluten-free for months or years. That totally sucks.

If you have one (or more) how did you discover the second intolerance? If I'm reading correctly, you get better on the gluten-free diet for a while, then your intestines start acting up again, as well as other problems like acne, eczema, joint pain, etc?

What causes you to at first have Celiac and get better on the gluten-free diet, THEN come down with another intolerance?

I'm lactose intolerant because of Celiac and hope that once the villi return that I'll be able to eat dairy, but obviously I'm preparing for the worse and want to know what to watch out for in case another intolerance pops up.

Another questions - does anyone know how common it is to have a second intolerance in addition to gluten?

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From what I understand, most people already have the other intolerances, it's just the gluten is masking them, once the gluten is gone, then the others start to surface too.

I went gluten free in July of 2000. I was gluten free for 3 yrs probably before soy became a problem. I decided to try the Blood Type Diet. I am Type A and the Dr. says that type A's should stay away from dairy, so I switched to soy. I was drinking 8th Continent Vanilla Soy Milk and using tofu, soy flour, etc. My tummy just kept getting worse and worse. That's when I had a "duh" moment and realized I couldn't have soy. So I stopped the soy and went back to my dairy. My sister insisted I take a calcium supplement, which also started to make me ill after 3 weeks. One day I was reading the ingredients and there it was, SOY! Confirmed my decision--soy intolerance. That was just before I moved here to Long Island and Christmas time. For Shristmas that year, I cooked a turkey with stuffing for my family, cornbread stuffing. Yes, gluten free cornbread, I made myself. I got so sick. I thought maybe I was glutened by something else that day. I mean, come on, all my grandkids and kisses and all that food. Yet, the cornbread was so good, so I made it again a week later and got sick again. Then I realized, corn may be an issue. So I started to experiment and yup, corn was a problem too. Then nightshades hit me. Tomatoes in any shape or form. I tried fresh, stewed, juice--everything, I love them and they make me ill within 1/2 hour. Then I lost my potatoes and I grew up on potatoes. No red meats, or shellfish. Mushrooms have been gone for years and years. Then I lost my rice, although I can eat my ricecakes still. Cruciferous veggies (cabbage, broccoli, cauliflower, etc) are gone. I have a very limited amount that I eat now and I shutter to think what could be taken away now, but my tummy has calmed. Everything has been good now for well over a year.

Now things seem to be concentrating on chemical allergens, sinus wise. I seem to be developing asthma. The doctor has given me an inhaler to carry. So many more scents are bothering me now. Seems to be a neverending thing with me. I have worked in this office for 2 months short of 3 years and we have always had this very strong acetone for lenses and in the last 2 months, it takes my breath away. Carpet Fresh blocks my sinuses for a week. I work for an optometrist and we have an optitician on site. We have polycarbonate lens being cut everyday, my face burns everyday. I'm sure it's all connected.

I'm so happy for those who feel so much better and I wonder why I can't be them. Was it because I went so long without diagnosis? Is it the degree of my celiac disease? Are there many different types of celiac and they just don't know it yet? That I am sure of! I was 46, my sister 43 at diagnosis, she doesn't have all these problems. I feel like I figure out one, just to have another stump me for a while. Well, only the strong survive and I am tough! :lol:


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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I'm so happy for those who feel so much better and I wonder why I can't be them. Was it because I went so long without diagnosis? Is it the degree of my celiac disease? Are there many different types of celiac and they just don't know it yet? That I am sure of! I was 46, my sister 43 at diagnosis, she doesn't have all these problems. I feel like I figure out one, just to have another stump me for a while. Well, only the strong survive and I am tough! :lol:

IF you're intolerant to so many things, what do you eat???

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I only buy boneless, skinless chicken breast now, occasionally cod, talapia, or flounder, sometimes tuna--green beans, peas, small amounts of carrots--some fruits, of course, my peanut butter and ricecakes (I asked one of Dr. Green's nutritionists about why I can still eat ricecakes and she says it happens, even with an intolerance to some foods, there will be certain things you can eat, like an intolerance to potatoes, you may still beable to eat potato chips, and I can, or intolerance to rice and a person can eat ricecakes--they do not understand why, yet it happens)I never had to give up dairy, so I can still eat cheese, vanilla ice cream (mixture upset my tummy, like butter pecan, swirls) yogurts, etc.

The list isn't very extensive, very boring really and I do get depressed at times. Then I mentally slap myself and remind me how very sick I was 8 years ago and try to remember those days. I want to eat like other people, I want to enjoy holidays like my sister does, she is celiac too and still can eat turkey and all those goodies and I wonder, "WHY ME!"

I just pray that nothing else gets taken away from me and I often wonder if I could get my adrenal/thyroid issues under control and my metabolism working again, maybe I could have some foods back--who knows. But, that goes back to finding doctors that actually look at a person and listen, and all I find are doctors who look at numbers and it is very discouraging.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Darlinda,

What does your tummy do when you have the foods that you are intolerant of? I am wondering myself about soy and tomatoes. My stomach rumbles loudly, and I have D. I do best when I eat tuna, rice toast and green, cooked veggies. Very boring!

Terri


Diary free 11/06-6/08

Now using a small amount of low-lactose dairy such as aged cheeses and yogurt. Yum!

Gluten-free since 4/07

"When you row another person across the river, you get there yourself."

- Fortune Cookie

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The list isn't very extensive, very boring really and I do get depressed at times. Then I mentally slap myself and remind me how very sick I was 8 years ago and try to remember those days. I want to eat like other people, I want to enjoy holidays like my sister does, she is celiac too and still can eat turkey and all those goodies and I wonder, "WHY ME!"

Deb,

Here I'm am, sitting here feeling sorry for myself because my family blew me off this Thanksgiving due to the new Celiac diagnosis... it's such a stupid excuse for people to not want me to come to their house and bring my own food or for me to cook for them, right? Well, I couldn't convince them so my dh and I decided to forgo the whole big dinner thing - too expensive and time consuming for 2 people.

It's so stupid when comparing my situation to yours. When people ask me, I list what I can't eat. When people ask you, you list what you can eat. I hope you have a more understanding family. It's hard to deal with restrictive diets when get-togethers always revolve around food (at least with my family).

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Terri, to answer your questions first--tomatoes give me diarrhea usually within 1/2 to 1 hour. Most nightshades do. Corn and soy constipate me and also cause this nasty red rash, sometimes raw, on my tummy. Usually the rash is my first sign that I have eaten something with corn or soy. If I get gluten, corn, or soy on my skin, instant burning sensation.

Trillian, I honestly do not have a more understanding family than you. For now, I live 800 miles away from my family, so it doesn't really make a difference. Yet, when I am with them, they just do not understand. My kids do not bother me about my food, they let me eat what I eat and it's all ok. Now my mom, that's another story. She thinks I am nuts. My sister and our dad are celiac's too and they do not have these other intolerance's so therefore, I am just being foolish! When I told her I can't eat potato salad and explained why, she seemed to be listening, yet later, I saw potatoes in a bowl in the sink. I asked why she left them out and she told me they were for me since I can't eat potato salad. So I explained to her I can't eat potatoes in any shape or form and she told me I was just being foolish, that potatoes can't hurt me. I was very upset, just walked outside and cooled off. She will never understand, simply because she doesn't want too. It's very upsetting to me when my family looks at me like I am a fruitcake. I would much prefer to be like them. I certainly did not ask to be this way. I had not seen my brother in 3 yrs and instead of saying hi to me, he said, "Hey, I have something for you out in the truck, it's a 50# bag of potatoes!" I was so upset, I could have cried. My mom had told him how foolish she thought I was while I was outside. I am 52 yrs old, I'm pretty sure I have figured out how to live my life by now. Sometimes we just have to overlook others and try to realize they will never change and it's their problem, not ours.

Being celiac has taught me so much. I would never treat a person as my brother treated me. One day he may just understand. My mom just told me that his knee is giving him problems and he just had to have an MRI on it. I wonder how he would feel if I teased him about MRI's. Which, by the way, I would never do. I would be the person who would offer to go with him, the person who would tell him they aren't as bad as they seem. He will never know that because he chooses to always be mean to me. Sad huh?


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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I went to a Naturopathic doctor shortly before I got my celiac diagnosis, and got tested for food intolerances. That was very helpful - from there, I did some testing for myself, and the list was pretty accurate. The amazing thing was that after cutting out gluten, I noticed my reactions to these other intolerances much more. I concur with the idea that the intolerances don't START a while after cutting out gluten, it's just easier to notice them.

My primary intolerances (and a few of the symptoms) include tomatoes (indigestion, acid reflux), potatoes and other nightshades (joint pain), dairy (almost all the same symptoms as I get from gluten), soy, chocolate, and eggs. Plus I still can't eat raw veggies or legumes (after 13 months gluten-free).

Deb, It sounds like we have the same family! I am also 52 years old, and find that somehow my food issues are disregarded and "laughable", but ANY other phyical ailment of other family members is taken seriously. I also live far away from family, so I don't face it too often, but even a phone conversation with my mother about Thanksgiving dinner got a bit ugly. She sounded a bit horrified that we were having guests, but not allowing any gluten in the house, as though our guests were going to be horribly deprived! Ok, we didn't have pie :( , but otherwise, it was a wonderful meal.

My parents visited a couple of weeks ago, and I am still recovering from trying to eat more "normally" for them (not gluten, but tomatoes, mushrooms, and such). I don't think I'll make that mistake again - it just isn't worth it.

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Well Sillyboo, no one, not even my mother can make me feel guilty enough to eat something I know I can't eat. Don't ever feel like you have to do that to please another, it's just not worth it.

Nearly everytime I talk to my mother or get a letter from her, she makes me feel sad. She sends me recipes for things she has made my dad that he really liked, gluten free foods and she wants me to try them too, but they will contain 8 items, 7 of which I can't have, and she knows it, it hurts that she does that. Why? She thinks I am just being stupid, it's all in my head that I can't eat all those other foods and if I would just try them, I would be fine. She's wrong, and I know that, yet I will never convince her of that.

I know now, at 52, that I will never please her, nothing I will ever do will be enough. That fact hurts me so much, yet I have got to learn to deal with it. If my sister went to my mom and told her she had developed an intolerance to something else too, she would accept her word, no question, and then, of course, I could also be intolerant to that food, simply because my sister is too. I love my sister, it's not her fault, don't get me wrong. If my sister had not been found to be celiac, then my mom probably would not have believed me either. My sister is a diagnosed celiac, our father and I are self diagnosed, after years of doctors mis-diagnosis. My sister was 42 at diagnosis, I was 45 when I went gluten free and our dad was 69. My sis and I have been gluten free for 7 yrs and dad for 3 yrs.

Deb


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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