My Life Was Taken By Celiac...i'm Trying To Wreastle It Back

[saralis27]

Hello everyone!

I'm new to these boards, though I have read them off and on for a while. There is a lot of information!! Thank you all!! :) My mother introduced me to them...she was diagnosed with DH.

I'm 24, female, and weigh about 97 pounds. I've been this way most of my life...for some reason I don't really gain weight. I thought that it was just a good metabolism, but apparently I was wrong.

Anyway, I've had stomach problems all my life, when I was little I used to get really bad heartburn, in my teens I got diarrhea when I got nervous, and started having really bad flatulence problems. I can't burp by the way, if I drink a soda, the bubbles just sit in my stomach until I lay down, then turn into flatulence. Sometimes if I wasn't able to lay down, the gas would induce gagging. When I turned 20, I started having problems with diarrhea, and got into a cycle of taking immodium one day then a few days later I would have diarrhea again, so I'd take more immodium....etc. That was ok, I was able to deal with it. I did go to the Dr, but they thought it might be Irritable Bowel Syndrome, and I disagreed so I didn't follow it up.

In the summer of 2007, I got very very sick to my stomach and had diarrhea and vomiting for two days, but was not able to eat anything for several days after that. I lost 12 pounds and had to take two and a half liters of IV fluids. The doctors that took care of me couldn't find the problem, why I could not keep anything in my system. Eventually they suggested that I eat rice with the crackers because I was sick of the crackers.... I finally got well, and was back to my old immodium-diarrhea-immodium-diarrhea cycle.

In June of this year (2008), I started eating frosted mini wheats for breakfast cause I used to like them when I was a kid. Every single day that week, I had extremely bad diarrhea. This was very bad because I was a graduate teaching assistant at a university and I was teaching a morning class. During that morning class the cramps would start and it would take everything I had to hold control until class let out. I was very upset by this and talked more to my mother, who has DH. She suggested (and I finally listened) that I should try not eating gluten for a bit to see how I felt. As soon as I stopped eating gluten for breakfast, I was GREAT! I reacted so well to this that I could not handle the idea of going back to gluten. I got tested after being off of gluten for 6 days, and while it was not in the "weak positive" range of 6-8, the test did show that I was a 1.7. The doctor that administered the test realized the results of being on a gluten free diet for me and decided that I did in fact have Celiac. We did not follow up with a biopsy because of the money issue, we didn't have insurance and we didn't have the money.

Anyway, here I am in November, and for the past two and a half months, I have been having problems of other sorts...

Every single morning for the past two months, I have awakened with diarrhea. I am not pregnant, I have had my period regularly and because I still wasn't sure, got tested and was negative. When I wake up, I'm ok for a few minutes, but then as soon as I eat something....anything....or if I don't eat anything at all, about 30 minutes to an hour the first round starts, usually followed by discomfort and annoyingness for another two rounds. I have tried many different kinds of breakfast stuff, I have tried not eating, pretty much anything I can think of.

What I've tried:

-I am not on birth control, any pills I take are gluten free; I not only use a gluten free shopping guide, but I call the manufacturer as well.

-I've changed food, I was eating PopSecret popcorn a lot, I thought that was it. I stopped eating it for a while and it seemed to help, then it just started back up again.

-I am eating Rice Chex with a gluten-free sugar and milk now...it seems to help a bit, but doesn't completely eliminate the problem.

-I have tried cutting out milk products, thinking maybe I am lactose intolerant, but to no avail, and yes, I did it very carefully.

-I am now on generic Levsin for IBS, I read somewhere on these forums that IBS can still be a factor when one has Celiac, and having dealt with nervousness problems in high school I thought that might be something to try. It seems to help a bit, it definately helps to calm my stomach when I start getting nervous about stuff.

-I tried Paxil for depression and anxiety about my problems, but I got sick on it.

-I am now trying generic Wellbutrin for my anxiety and depression, I've only been on it for two days so I don't really know what it's going to do to me yet.

Now the thing that makes all this the worst is that being sick to my stomach in any way at all is my phobia. Some people are scared of snakes, or spiders or clowns, I'm scared of the very thing that I'm cursed with. The fact that my worst nightmare comes true every day and no matter what I do I can't fix it is really wearing on me. In the past month, I have missed teaching classes more often than not because of my stomach issues. I cannot perform my normal tasks and I can feel control of myself slipping away. My family has a history of depression so I have been seeing a counselor. Sometimes it seems to help, and sometimes it doesn't.

We do have insurance, but we do not plan on getting me tested yet because of "preexisting" conditions clauses. My husband is trying to get into the Border Patrol, and if he does, we will have very good insurance and be set; but if I'm diagnosed with something other than Celiac, it will be classified as a preexisting condition.

So there we go! Sorry this post was so long, I've been holding all this in for a while and not wanting to talk about it. Thanks for your support!

By the way, I realized I misspelled Wrestle...sorry!

[CeliacAlli]

Hello everyone!

I'm new to these boards, though I have read them off and on for a while. There is a lot of information!! Thank you all!! :) My mother introduced me to them...she was diagnosed with DH.

I'm 24, female, and weigh about 97 pounds. I've been this way most of my life...for some reason I don't really gain weight. I thought that it was just a good metabolism, but apparently I was wrong.

Anyway, I've had stomach problems all my life, when I was little I used to get really bad heartburn, in my teens I got diarrhea when I got nervous, and started having really bad flatulence problems. I can't burp by the way, if I drink a soda, the bubbles just sit in my stomach until I lay down, then turn into flatulence. Sometimes if I wasn't able to lay down, the gas would induce gagging. When I turned 20, I started having problems with diarrhea, and got into a cycle of taking immodium one day then a few days later I would have diarrhea again, so I'd take more immodium....etc. That was ok, I was able to deal with it. I did go to the Dr, but they thought it might be Irritable Bowel Syndrome, and I disagreed so I didn't follow it up.

In the summer of 2007, I got very very sick to my stomach and had diarrhea and vomiting for two days, but was not able to eat anything for several days after that. I lost 12 pounds and had to take two and a half liters of IV fluids. The doctors that took care of me couldn't find the problem, why I could not keep anything in my system. Eventually they suggested that I eat rice with the crackers because I was sick of the crackers.... I finally got well, and was back to my old immodium-diarrhea-immodium-diarrhea cycle.

In June of this year (2008), I started eating frosted mini wheats for breakfast cause I used to like them when I was a kid. Every single day that week, I had extremely bad diarrhea. This was very bad because I was a graduate teaching assistant at a university and I was teaching a morning class. During that morning class the cramps would start and it would take everything I had to hold control until class let out. I was very upset by this and talked more to my mother, who has DH. She suggested (and I finally listened) that I should try not eating gluten for a bit to see how I felt. As soon as I stopped eating gluten for breakfast, I was GREAT! I reacted so well to this that I could not handle the idea of going back to gluten. I got tested after being off of gluten for 6 days, and while it was not in the "weak positive" range of 6-8, the test did show that I was a 1.7. The doctor that administered the test realized the results of being on a gluten free diet for me and decided that I did in fact have Celiac. We did not follow up with a biopsy because of the money issue, we didn't have insurance and we didn't have the money.

Anyway, here I am in November, and for the past two and a half months, I have been having problems of other sorts...

Every single morning for the past two months, I have awakened with diarrhea. I am not pregnant, I have had my period regularly and because I still wasn't sure, got tested and was negative. When I wake up, I'm ok for a few minutes, but then as soon as I eat something....anything....or if I don't eat anything at all, about 30 minutes to an hour the first round starts, usually followed by discomfort and annoyingness for another two rounds. I have tried many different kinds of breakfast stuff, I have tried not eating, pretty much anything I can think of.

What I've tried:

-I am not on birth control, any pills I take are gluten free; I not only use a gluten free shopping guide, but I call the manufacturer as well.

-I've changed food, I was eating PopSecret popcorn a lot, I thought that was it. I stopped eating it for a while and it seemed to help, then it just started back up again.

-I am eating Rice Chex with a gluten-free sugar and milk now...it seems to help a bit, but doesn't completely eliminate the problem.

-I have tried cutting out milk products, thinking maybe I am lactose intolerant, but to no avail, and yes, I did it very carefully.

-I am now on generic Levsin for IBS, I read somewhere on these forums that IBS can still be a factor when one has Celiac, and having dealt with nervousness problems in high school I thought that might be something to try. It seems to help a bit, it definately helps to calm my stomach when I start getting nervous about stuff.

-I tried Paxil for depression and anxiety about my problems, but I got sick on it.

-I am now trying generic Wellbutrin for my anxiety and depression, I've only been on it for two days so I don't really know what it's going to do to me yet.

Now the thing that makes all this the worst is that being sick to my stomach in any way at all is my phobia. Some people are scared of snakes, or spiders or clowns, I'm scared of the very thing that I'm cursed with. The fact that my worst nightmare comes true every day and no matter what I do I can't fix it is really wearing on me. In the past month, I have missed teaching classes more often than not because of my stomach issues. I cannot perform my normal tasks and I can feel control of myself slipping away. My family has a history of depression so I have been seeing a counselor. Sometimes it seems to help, and sometimes it doesn't.

We do have insurance, but we do not plan on getting me tested yet because of "preexisting" conditions clauses. My husband is trying to get into the Border Patrol, and if he does, we will have very good insurance and be set; but if I'm diagnosed with something other than Celiac, it will be classified as a preexisting condition.

So there we go! Sorry this post was so long, I've been holding all this in for a while and not wanting to talk about it. Thanks for your support!

Just some thoughts to keep in mind:

-Depression and anxiety often go hand in hand with celiac disease(untreated)

-Many people who are celiacs are lactose intolerant for some time, and diarhea etc. may not go away immediately

-I don't eat breakfast many mornings because my stomach isn't up to eating, late morning breakfast...

What other things are you eating on a regular basis?

Are you having cravings for things with gluten in them?

If you'd like any recipes feel free to message me. Or even if you'd just like to talk!

Hope you feel better!

[dilettantesteph]

When I went gluten free my diarrhea instantly stopped. At first all I did was eliminate bread and cereal. Over time I added gluten free products. Some say processed in a facility that also processes wheat. Those made me sick. Some don't say it on the bag, but you can find out by looking on line. As time went on I became more sensitive to gluten and found more things that I didn't realize had gluten in them, like tums, some vitamins. Gluten free rice chex made both my son (diagnosed celiac, how I found out about it) and I have gluten reactions. I think they must have a tiny amount of contamination. Most celiacs don't have problems with it, but some do. As someone else mentioned you should eliminate lactose. I got horrible depression with my initial gluten reactions. I literally felt like killing myself. That doesn't happen any more now. After about a year my reactions have become much less extreme. I would find a diet that doesn't make you sick and then add things one a week checking for reactions to find out what makes you sick and what doesn't. It is a bit boring at first, but you end up with lots to eat and healthy. With some diligence you will get your life back.

[YoloGx]

Welcome to the boards! Am glad you finally consulted us.

A lot of people with celiac initially have to go off all grains and eat a "cave man diet". You might be one of them. It really won't hurt in any case to give it a try. It really helped me. Eventually I added other grains like teff, sorgum and amaranth and well washed quinoa. Now finally I can eat thoroughly washed brown rice. I wash it about five times until the water runs clear. My understanding is that rice is often trace contaminated with other grains. I still can't eat rice chex very often by the way. They convert to sugar too fast for me and I get a fungal reaction. White rice does the same...

I also avoid tocopherols unless they say tocopherol acetate. And caramel coloring etc. -- even though they say its safe here in the US it ain't for me...

CC can be from anything --one thing to be careful of is the glue in envelopes. Use a special knife to open them. And absolutely don't lick! Also of course clean up or have someone clean your house of all possible trace glutens...

Meanwhile you may need to do something more to heal the lining of your intestines. It sounds like they have gotten a thorough beating. I highly suggest using slippery elm caps between meals or make a gruel out of it. It needs whisking--use i tablespoon in a small amount of water and then add a full cup of water. Boil lightly while continuing to whisk every now and then for ten minutes.

Marshmallow root caps with meals is also a good idea. They too soothe and heal the lining of your intestines etc.

Bromelain/papain caps between meals will take down the inflammation, and with meals will help digest your food better. Pancreatin with meals is also a good idea especially if you eat much protein in a particular meal. Some people need HCL--I don't since my stomach produces plenty of stomach acid. If you experience burning after taking it with meals avoid it in the future. But otherwise you may need it.

Dandelion root and/or milk thistle caps will help your liver deal with the toxicity likely circulating in your system from undigested proteins going into your blood stream from damaged villi in your intestines opening up a pathway.

The above remedies have been used in Europe by people with "wasting disease" which finally turned out to be celiac sprue...

Hope this helps. Please let us know.

Bea

[debmidge]

With regard to Pre Existing condition clauses, please review this insurance

website....

Open Original Shared Link

[saralis27]

I have read elsewhere on the forums here that depression is very common among Celiacs, that's why I finally agreed to try these drugs.

As for the lactose intolerance, I have been keeping a food log for two months of anything I put in my mouth, even how much water I drink in a day. After cutting all lactose/dairy/milk products for two weeks, I finally gave up and started on dairy again. I noticed no difference. And I was very careful about what I ate, making sure they were lactose free. Also, if I eat dairy products later in the day, for example, some pudding at night, or cheese with my lunch, I have no problems. I'm really not sure what to think about it...

Other things I eat....well, not too much really. My husband bought me a cookbook with several recipes for things, but I have had problems with many of those, so I tend to shy away from them. I try to eat a healthy balance of fruit/protein, etc, sometimes it works better than others. The problem is that I seem to have reacted to various vegetables and fruits in the past, so I am reluctant to try those again.

As for cravings, Mexican food, I miss that sooooo much, pizza/Italian food......I ate soo much pasta before I was diagnosed. Like those Stouffer's lasagnas, OH, those were heavenly. It's hard to find recipes for these that I actually like because they taste so different.

Thanks for your input!

[saralis27]

My initial reaction was the same as yours, as soon as I stopped the gluten, the diarrhea stopped. Until three months ago. So like I told CeliacAlli, I started keeping a food log of everything I eat and every reaction that I have, including bowel movements, feelings, etc. I did, very seriously, eliminate lactose, for about two weeks, with no changes. There's a bit more elaboration in my reply to Alli.

Do you have any suggestions for something that is completely totally gluten free that would sustain me for a week or two while I worked out a diet like that? I've tried making certain foods a staple that have not bothered me while I experiment with others with some success. If I am getting hidden gluten or something I react to, I still haven't found it and I have been very particular about my diet since going gluten free.

Thanks for your input!

[saralis27]

Wow! Thanks for the advice, I've never heard of most of these things. There is a health food store here, I'll look into it.

[saralis27]

Awesome, a very valuable resource. Thanks!

[dilettantesteph]

My initial reaction was the same as yours, as soon as I stopped the gluten, the diarrhea stopped. Until three months ago. So like I told CeliacAlli, I started keeping a food log of everything I eat and every reaction that I have, including bowel movements, feelings, etc. I did, very seriously, eliminate lactose, for about two weeks, with no changes. There's a bit more elaboration in my reply to Alli.

Do you have any suggestions for something that is completely totally gluten free that would sustain me for a week or two while I worked out a diet like that? I've tried making certain foods a staple that have not bothered me while I experiment with others with some success. If I am getting hidden gluten or something I react to, I still haven't found it and I have been very particular about my diet since going gluten free.

Thanks for your input!

Totally safe would be fruits and vegies, but not citris, berries or tomatoes because they are hard on the stomach. Bananas and watermelon are easy on the stomach. Also unflavored yoghurt, eggs, and quinoa. Other foods bad for acid reflux which you should avoid until you heal more are soda, chocolate, fat, milk, cheese and ice cream. My son had to go off all of those for about 2 months then added them back gradually and now eats normally except for no gluten. BioK helped us both a lot. I would get the dairy one. The lactose will be processed by the microbes, and the non dairy is awlful tasting. Meat is also good. Hormel makes a packaged meat that says gluten free on the label that my son doesn't have problems with. I'm vegetarian. He isn't as sensitive as I so I can't guarantee it. Hope you feel better soon.

[CeliacAlli]

At whole foods they have gluten free lasagna's, for when you are craving lasagna. I do have to say though that if you are craving gluten filled foods, you are most likely not free of gluten, so somewhere it is getting into you. I think that other than that dilettantesteph covered all of the other things I would use to clear out the system

I hope you feel better!

[YoloGx]

Wow! Thanks for the advice, I've never heard of most of these things. There is a health food store here, I'll look into it.

Glad to be of help. Let us know if these suggestions work for you. Good luck!

Bea

[DarkIvy]

I just want to say I can very much relate! I'm a point where I'm also struggling to get healthy again and I've been loosing weight and dealing with depression, too.

Everyone has given you some really excellent advice. I'm considering the "cave man" diet, too temporarily. It's a frustrating thing, isn't it?

I hope you get better soon!