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Can't Get Well!

key

By key
in Coping with Celiac Disease

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key Contributor
key
Posted

I am SO frustrated! I know I need to go back to the GI doctor and have a scope and see about reflux. I know I drink too much caffeine, eat too much dairy and too much sugar! I just can't seem to get a grip! I have gained about 3 pounds. I was underweight. I feel like I am always nauseated or having C or D or reflux or heartburn or some sort of indigestion!

I have quit eating out completely. I don't eat meat, so it is hard being gluten free. I eat Kinnikinnick breads, but feel like they have been contributing to my stomach problems.

I have been trying to eat and be healthy, because I had wanted to someday have another baby, but I am SO frustrated I feel like being anorexic. If I just quit eating I wouldn't be sick to my stomach all the time. EVery single time I eat I don't know If I will feel sick afterwards.

It has been a year and half since this all started. I am on Lexapro, which helps me with having a more positive outlook about all my health issues. I also started Prilosec 4 days ago, (again) out of desperation. I don't know if it is really helping me.

It would be great to quit caffeine, but I have only been trying for about 15 years without success! I am hopeless. Normally, I am careful about not eating as much junk, but I think that maybe the Lexapro is triggering that problem.

Ok, just wanted to vent mainly. Anyone else going through something similar? I just want to be well!!!

OH, and I was doing GREAT for like two weeks to a month. This happens. I will be feeling perfect and then back to the way I was before. I can't figure it out anymore and hate the idea of cutting anything else out of my diet. For now I guess I will quit eating any sugar or dairy. The caffeine isn't going to happen!

Monica

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AmandaD Community Regular
AmandaD
Posted

Monica - Have you ever been formally diagnosed by ttg and bowel biopsy with celiac...

I'm curious...if you have, i've got a few suggestions for you because i had been goign through some issues myself...

jerseyangel Proficient
jerseyangel
Posted

Hi Monica :)

Sorry you're having all these problems. I seem to go through periods where I'm absolutely fine--and then revert back to feeling lousy. I'm sure that I'm not getting gluten at these times either.

I also can't tolerate gluten-free breads--I'm sensitive to a lot of the ingredients they use. Maybe that's the case with you? Have you tried to go to more of a basic diet--I know you don't eat meat, but just whatever protein you do eat, fruit, veggies, water and add from there?

I had to do that last spring. and I uncovered several additional intolerances. Since I cut them out, I have more good days than bad.

I'm glad you came to vent--we all understand how frustrating this can be! I hope you can get to the bottom of some of these things soon :)

Budew Rookie
Budew
Posted

Same situation.

I found that the kinickinick tapioca bread is a problem for me too. I'm trying Samis now. Seems to be better.

I have tested positive for celiac and thyroid disease. Everything else I have discovered through elimination.

I have strong reactions and feel sure that Iodine, eggs, nightshades (especially tomato, pepper, banana, white potato) all are very problematic.

I can tolerate small amounts of dairy. One serving of hard cheese or ice cream daily seem okay.

Milk is out but cream in my coffee is not a problem.

Acidic foods, vinegar, soda, wine, and cucumber are very iffy.

I stay away from high salicylic foods. Nausea and heartburn with too much.

Still not feeling well so I have eliminated soy, no verdict yet.

I have cut down on corn products, but I am not meticulous, no verdict here either.

I have been vegetarian for 30 years by choice, but now react to exposure.

I have not tried oats because I haven't seen clear data saying it is okay.

I have trouble ingesting fats, so I stick to margerine, olive oil, and sesame oil.

Hope this gives you some direction. B)

allison Rookie
allison
Posted

I have horrendous reflux! They put me on prevacid, but it's hardly done anything. It makes me feel like I can't breathe fully (apparently if it irritates your espophagus enough it cuts off your inhale). Do others have reflux issues? Is this something that comes with celiac?

key Contributor
key
Posted
  • Author

I have a son with Celiac. I had the blood work after being gluten free for 6 weeks and it was borderline positive. Normal was like below 18 and my number was 16. My Igg was way above normal, but that is least specific for celiac. THe GI doctor wanted to do the biopsy, but at the time, I didn't want to do it. I thought if I am gluten free and feeling well, why start eating gluten again?

I have many things that went away and have stayed gone for months. I will list those. No more bone pain, bruising, anemia gone, gained about 3 lbs., gas and bloating are gone, don't have diarhea like I had (unless gluttened good), less constipation, no longer waking up in the middle of the night with stomach pain and brain fog is way better. I also had heartburn that went away for months, but seems to have returned. Now the nausea will hit me in waves at times, but isn't a constant lowgrade thing like it was. I can't eat wheat. I have tried and everything goes "straight" through me! Very painful bloating and I feel like throwing up! It is horrible!

I made a doctor's appointment with a non-blood relative that is an internal medicine doctor. I am hoping he can be helpful. He is supposedly awesome. I am going to probably have the upper GI done now, because I want to know where I stand. WHat my stomach looks like. I have never ruled out H. Pylori. THe GI doctor before didn't think I had it, because of my age.

I guess I am going to go off of Lexapro, because I have had these episodes of having my heart race, feel nauseated and suddenly have to go to the bathroom. It hits me at anytime and it makes me very panicky. I am thinking it may be caused by the Lexapro. The Lexapro has helped me some I think, in some ways. I also want blood work done again to check my thyroid. The past few weeks I have indigestion everytime I eat. I feel like my food is just sitting there and then suddenly I will be starving. If I eat though, it is the same cycle of heartburn or whatever. The reflux is horrible. I can't even chew gum, because my throat burns.

I am going to try and eat a very basic diet. Soy doesn't usually agree with me. Actually nothing seems to agree with me at all. High fat, processed foods.

Oh and I am really thinking for sure that gluten free breads do not agree with me at all. At least not lately. I ate part of a gluten free pizza the other day and my stomach just ached.

I am thinking of just drinking water, until I figure out what is wrong. I guess I could try ensure, but the dairy and fat would probably make feel gross!!

I also have a GI appointment, but that is a month away.

Would love to quit caffeine, but I really don't drink that much of it at all. One cup of coffee or mocha from Starbucks and a 12 ounce soda per day. It is my only pleasure! I don't drink alcohol, or meat or wheat and now I am having to cut out dairy and gluten free breads and sugar. I already lost weight in just one day yesterday.

Ok, it is getting long. Thanks for all the advice. I know I should try an elimination diet, but I can't stick to it. I get hungry and want normal food. Of course I never eat gluten by choice.

Monica

Yenni Enthusiast
Yenni
Posted
I have horrendous reflux! They put me on prevacid, but it's hardly done anything. It makes me feel like I can't breathe fully (apparently if it irritates your espophagus enough it cuts off your inhale). Do others have reflux issues? Is this something that comes with celiac?

I have absolutely terrible heartburn. It is way better since I stopped with gluten/soy/dairy but it is still there. I haven't done this for that long yet though.

But yeah, I got sores in my throat and I have been on Protonix 40mg/twice daily for 3 years (before that I tried others that helped less). The Protonix only took away the worst and my doctor asked me to eat another medication in addition to Protonix which only made me feel sick instead.

The only thing that has made any difference with this is stop eating gluten/soy/diary. I still have it every day though, but not half as bad.

I am hoping it will go away with some time.

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key Contributor
key
Posted
  • Author

Just curious, do you still drink caffeine?? Anyone with reflux? Just wanted to know if that would help with mine. I don't think I drink that much, but none would be best if I could quit.

Heartburn and reflux stink. Have you tried Nexium?

aggieceliac Newbie
aggieceliac
Posted

So that's crazy you're name is Monica too (obviously mine is). Anyways I have felt this way for the past couple weeks. I haven't been eating well due to time constraints and flat out laziness when I do have time. I get to a point where I'm like why even bother eating when it seems everything goes straight through me and makes me sick and miserable. This week I was glutened by who know what. But tues afternoon had the stomach symptoms and was on the phone with my mom complaining to her and attempting to convince her that nothing will make me better(she suggested yogurt, apples, and bananas) and no one understands how I feel and what I'm going through, not even me. I calmed down a bit and started feeling a little better. I had a test in the morning and a paper due the next night. I did well on my test suprisingly but I didn't think I could finish my paper well enough due to me not feeling well so thankfully my professor extended it for me. Good thing too because Wed afternoon the migraine came and has been off and on since. It's just so frustrating and have so many other things to deal with I really just don't want to deal with this anymore. But oh well, life could be worse.

key Contributor
key
Posted
  • Author

Hi Monica (nice name),

I am sorry you are going through the same thing. It is very hard to know what to eat, when everything seems to make you sick. My mom says I need to quit drinking caffeine, but i don't drink that much and feel sorry for myself that I am not aloud "one pleasure" in life! HA!

I am eating alot of bananas right now. Yesterday I tried eating more normal and ended up feeling gross again last night. I bought some ensure, which has dairy, but at least it is liquid and that should help. I really don't know what to do anymore at all.

THe one thing that seems to have helped my mood is Lexapro. I used to get very down about all this and it does help me cope some, but I am wondering now if it is causing me some problems too. UGH!

At least you did good on your test. I would hate to be going through all of this while I was in school. I have 3 kids, but it doesn't take as much concentration for that. I can't mindlessly go about that. Although, I was homeschooling and all my health issues lead me to put him in school. I couldn't deal with all of that right now.

Try eating plain foods. I know that is boring, but applesauce, bananas, yogurt(gluten free) may help if you can tolerate any dairy. Plain soups. I tried cooked carrots and plain baked potatoe the other day. THat seemed to work, but it was also extremely boring. I saw an Olive Garden commercial the other night and almost cried! I miss having a normal life and going out with friends. This is my life though and it could be much, much worse!

Take care and hope you get your paper done soon. I saw the lastnight that Botox treatments were good for migraines. It was on Discovery Health channel by some Migraine "expert".

Hang in there,

Monica

sfm Apprentice
sfm
Posted

I am so relieved to hear that some of the things I've read about taking care of celiac aren't a perfect fix.

I have not been tested yet, but my daughter has tested positive, and from what I understood of it, I decided to try cutting gluten out of my diet. The results were drastic; my stomach feels like a different stomach!

But I still have days when I feel like I can't eat anything without feeling awful. But I have only been gluten free for a few weeks; does it get better with time? I thought that maybe I am getting hidden gluten sometimes. I know about looking for modified food starch; what other ingredients can be risky?

Thanks-

Sheryll

happygirl Collaborator
happygirl
Posted

Monica - and all -

I have similar issues, unfortunately. I am being tested for eosinophilic disorders, which are food intolerance/allergy related. It can affect your esophagus, stomach, small intestine, and/or colon. The experts (who are at the Cincinatti Children's Hospital...but it affects many adults as well) say that it is a mini-epidemic. They believe these disorders are more common that Crohn's, etc., just severely under- and mis-diagnosed. Most doctors know absolutely nothing, or "know" incorrect information. (Sound like Celiac?!)

If you are interested, here is some good information I have found www.apfed.org and Open Original Shared Link

I don't know if this could be related to any of your problems, but it is something I thought I would pass along. Best of luck to you all. Feel free to PM if you have any questions.

Laura

allison Rookie
allison
Posted

AK JENNY:

What sorts of sores in your mouth? Were they white and in the back?

Also, can anyone tell me what yogurt is OK?

I have absolutely terrible heartburn. It is way better since I stopped with gluten/soy/dairy but it is still there. I haven't done this for that long yet though.

But yeah, I got sores in my throat and I have been on Protonix 40mg/twice daily for 3 years (before that I tried others that helped less). The Protonix only took away the worst and my doctor asked me to eat another medication in addition to Protonix which only made me feel sick instead.

The only thing that has made any difference with this is stop eating gluten/soy/diary. I still have it every day though, but not half as bad.

I am hoping it will go away with some time.

happygirl Collaborator
happygirl
Posted

allison,

very few foods are "safe" when you just ask if they are "overall" ok. It will depend on the brand, flavor, etc. Your #1 best bet to survive as a Celiac is to know which ingredients to look for. there are some great lists on celiac.com that can help if you need the basics. Or, we are here to help also.

When you find a safe one (and there are many!) you have to read the labels each and everytime, because they can change at anytime.

I hope this helps, some. :(

Laura

marciab Enthusiast
marciab
Posted

Key,

I can empathize with you because I remember how frustrating it was sticking to the diet before I realized how much better I felt on it. Now, I am just happy to know how to avoid feeling sick all of the time.

You really should try the elimination diet. Just keep in mind it is a temporary change. Once you are feeling better you can add old foods back in slowly to see if they were part of the problem.

In the beginning, when I got to the point where I just had to have something I knew I shouldn't, I pigged out on something I knew would not hurt my stomach, like carrots or spinach, etc. Filling up distracted me from wanting anything else.

Or in the case of the coffee, I diluted to the point where I could taste the coffee, but I knew it could not hurt me. Now, I don't like the taste of coffee at all.

Hope this helps ... Marcia

dragonmom Apprentice
dragonmom
Posted

I have been gluten-free ( or so I've thought) for about two years. my last test came back at 116- no a great number. Then I start thinking back- those Lindt chocolates with the barleymalt, different mustards that I thought were ok only to find out they weren't. So , it is back to the beginning again. Someone mentioned sores in their mouth. I seem to have a lot of sores on my tongue, my tastebuds actually. Anybody else have that problem?

NoGluGirl Contributor
NoGluGirl
Posted
I am SO frustrated! I know I need to go back to the GI doctor and have a scope and see about reflux. I know I drink too much caffeine, eat too much dairy and too much sugar! I just can't seem to get a grip! I have gained about 3 pounds. I was underweight. I feel like I am always nauseated or having C or D or reflux or heartburn or some sort of indigestion!

I have quit eating out completely. I don't eat meat, so it is hard being gluten free. I eat Kinnikinnick breads, but feel like they have been contributing to my stomach problems.

I have been trying to eat and be healthy, because I had wanted to someday have another baby, but I am SO frustrated I feel like being anorexic. If I just quit eating I wouldn't be sick to my stomach all the time. EVery single time I eat I don't know If I will feel sick afterwards.

It has been a year and half since this all started. I am on Lexapro, which helps me with having a more positive outlook about all my health issues. I also started Prilosec 4 days ago, (again) out of desperation. I don't know if it is really helping me.

It would be great to quit caffeine, but I have only been trying for about 15 years without success! I am hopeless. Normally, I am careful about not eating as much junk, but I think that maybe the Lexapro is triggering that problem.

Ok, just wanted to vent mainly. Anyone else going through something similar? I just want to be well!!!

OH, and I was doing GREAT for like two weeks to a month. This happens. I will be feeling perfect and then back to the way I was before. I can't figure it out anymore and hate the idea of cutting anything else out of my diet. For now I guess I will quit eating any sugar or dairy. The caffeine isn't going to happen!

Monica

Dear Monica,

It sounds like you have an overgrowth of Candida Albicans in your system. Systemic yeast infections can make you terribly ill. It is a leading cause of digestive problems. I cannot eat bread with yeast, because it bloats me and irritates my colon and everything else. Try a gluten-free, yeast free bread if you can find one. Dairy irritates Candida as well. Lactose feeds it. Aged foods also do. I am a full blown sugar addict, so I know how you feel. It sucks. My doc thinks I have Candida as well. I also am fond of my coffee! I have to have it! I love a cup or two a day. Folgers and I are best friends. I am currently gradually reducing my intake of sugar daily. That way, withdrawal will not be such an issue. Sugar is very addictive. If you would like more info on Candida, just ask. :) I wrote an essay on it. I also can tell you about the books to buy for more on the diet and treatment. Just give me your e-mail address and say the word!

Sincerely,

NoGluGirl

P.S. Candida is a leading cause of food allergies.

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