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Will I Ever Be Able To Have A Normal Diet?


jasonD2

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jasonD2 Experienced

I will be gluten-free forever, and thats fine, but I still cannot tolerate a lot of foods. my current diet is bland and boring...usually plain chicken, brown rice, vegetables, potatoes and cereal w/ rice milk...EVERY SINGLE DAY! i am hopeful that as my gut heals i will be able to start introducing new foods back in but whenever i do now they just mess me up. i can have normal BMS and feel fine but if i eat a blueberry or have a piece of orange or have some ketchup...my bowel will lock up, i get constipated w/ rock hard stools and indigestion. IS it gonna be like this forever?


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Wolicki Enthusiast

Jason,

It does get better! Just give it time. If you're like me, you're thinking you want to strangle me for saying to give it time, LOL. I know that's what I wanted to do when someone told me that.

You have to give your gut time to heal, and it will take a while. It varies for everyone. My recommendation is to stick with your boring food for 6 months. It won't kill you, you just think it might ;) Then try adding in ONE food at a time.

When I first started out 6 months ago, I could not tolerate dairy, nuts, legumes, grains (including rice) corn, broccoli, cauliflower, tomatoes, potatoes, eggplant and peppers. Now, I can have limited dairy, nuts of any kind, and rice. I feel confident the others will be ok eventually too. Hang tight and try to focus on your health and how much better you feel while strictly gluten free. It's worth it!

Happy Gluten Free new year!

Janie

missy'smom Collaborator

Jason, Have you tried the various oils to add flavor? They don't contain the proteins that cause people problems. I found mini bottles of garlic and basil oils at Cost Plus/World market and marinated a chicken for roasting with the basil oil. It was good. I bought some coconut oil recently and have been enjoying it added to canned pumpkin that I warm up or as the oil that I saute red cabbage and red onion in. I take chicken breasts and put them in a dish with plenty of oilive oil, salt, dried herbs and let hang out in the fridge for a few hours before cooking them. If you can tolerate mushrooms, you can buy dried, sliced or chopped s$#&ake mushrooms at asian markets and they're not expensive. Toss some into the rice when you start it cooking and they rehydrate and cook and add a nice boost of flavor, especially with brown rice. You can add things like raw diced sweet potatoes or butternut squash to the rice pot too and they will steam and cook along with the rice. I haven't tried these with stove top cooking but it works great in the rice cooker. Roasting vegetables even with just salt and oil gives them alot more flavor and if you're busy, you can roast a big batch and keep it in the fridge and just warm up in the following days. They keep well. Check the gluten-free Back to Basics thread for some other good ideas too. I've got a laundry list of things that are off limits at the moment too-meats, veg. seasonings etc. It's good to be able to come here and put our heads together to help each other out!

https://www.celiac.com/gluten-free/index.ph...c=63431&hl=

Ahorsesoul Enthusiast

Jason,

You will do fine once you heal. You have come a long way and you can do this. Hang in there. I know you can do this.

jasonD2 Experienced

Thanks folks! I pray i will be able to tolerate garlic again someday..ive also cut out eggs and hope i can bring them back in as well cause they are present in a lot of gluten free foods (and i love omelettes). I also love coconut products but they just dont sit well now. I guess i'll just wait it out :)

missy'smom Collaborator
Thanks folks! I pray i will be able to tolerate garlic again someday..ive also cut out eggs and hope i can bring them back in as well cause they are present in a lot of gluten free foods (and i love omelettes). I also love coconut products but they just dont sit well now. I guess i'll just wait it out :)

We were suprized when kiddo reacted to garlic in allergy testing. He's not a big fan of it like I am. I've been checking labels and calling companies alot lately and have found garlic in so many things! Now wonder. The allergist said as much. The basil oil I mentioned does not contain garlic though-the garlic one is separate. Where there's a will, there's a way and we have to get creative and think outside the box sometimes!

haleym Contributor
I will be gluten-free forever, and thats fine, but I still cannot tolerate a lot of foods. my current diet is bland and boring...usually plain chicken, brown rice, vegetables, potatoes and cereal w/ rice milk...EVERY SINGLE DAY! i am hopeful that as my gut heals i will be able to start introducing new foods back in but whenever i do now they just mess me up. i can have normal BMS and feel fine but if i eat a blueberry or have a piece of orange or have some ketchup...my bowel will lock up, i get constipated w/ rock hard stools and indigestion. IS it gonna be like this forever?

You will really be OK! Trust me. I have not had as much trouble as you, but when I was first starting my special diet I had a lot of frustrations... no more homemade cookies from mom, no more bratwurst on a bun, no more beer, pizza, etc. But then I realized that yes, I can make this work. It has taken creativity, that's all.

One thing that might be a great place to start is by trying other gluten-free grains. My friend's daughter who is also gluten free told me that she sometimes finds that, though she is not eating gluten, she finds herself in a food rut because Gluten-free food can mean just a lot of rice, potatoes and corn, over and over, day in and day out. My favorite grains right now are teff and quinoa if you can get ahold of them. Chicken, also is something that can be hard on the stomach... lamb is supposed to be one of the least allergenic meats out there, and sweet potatoes are as well. Try those out sometime if you can.

HANG in there though. This is a hard thing to go through, and we are all here to help. But soon you will feel great again, Im sure!


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gleegan Rookie

I am self-diagnosed Celiac since March of 2007 (doctors couldn't figure it out, so I finally did); I have learned a lot from this forum, but this is the first time I'm posting (and maybe I should have started a new subject instead of continuing on Jason's thread, but I have a similar situation so I hope that's ok...). As soon as I cut out gluten a couple of years ago, the difference was total and I was finally feeling healthy. However, once or twice a year, I stupidly eat a tiny bit of sugar (which is apparently a huge problem for my gut) and my whole system gets thrown out of whack. Each time it happens, new foods are suddenly undigestable, like mushrooms, onions, bell peppers...the list goes on. It's become very frustrating to put it mildly, but I do the best I can and when I'm more or less healthy, I deal ok with it. However, I ate ONE soy-free, dairy-free, gluten-free brownie recently (that I made myself) and it's started ALL OVER AGAIN. Somewhat similar to Jason, I can only eat a few things when my system is messed up like this: corn, potatoes, eggs, and rice. I guess my question, besides just venting, is whether or not anyone else goes through this and, if I eat this bland diet for a while but this time throw in a few mild curve balls like tomato sauce and peanut butter (which I normally CAN have), will the gut heal but just more slowly than on a total elimination diet? I'm not trying to be a baby; i am just FED UP with eating four things only for months whenever this happens. I would actually rather be a bit happier with my meals and suffer with my gut a month longer if possible. Does this make sense? I swear, though, I will never touch sugar again - I'm starting to believe it's evil incarnate (or for me it is anyway)! Any help would be appreciated.

gfp Enthusiast

If processed sugar is a problem then you might have some infection feeding off it.

Sugar obviously isn't good for anyone BUT a lot of starches and carbs break into sugars and ultimately glycogen is a sugar. In other words it is really unlikely YOU are reacting to the sugar (in that way) so much as something else like a parasite or yeast? The starches and hence sugars in corn, rice etc. take longer to digest before they are broken down and are probably in your intestines whereas raw sugar is straight to the stomach... so any parasite in your stomach gets a boost??

It is probably worth seeing a doctor as whatever it is is likely to be minor and treatable if really feeling quite bad!

gleegan Rookie
If processed sugar is a problem then you might have some infection feeding off it.

Sugar obviously isn't good for anyone BUT a lot of starches and carbs break into sugars and ultimately glycogen is a sugar. In other words it is really unlikely YOU are reacting to the sugar (in that way) so much as something else like a parasite or yeast? The starches and hence sugars in corn, rice etc. take longer to digest before they are broken down and are probably in your intestines whereas raw sugar is straight to the stomach... so any parasite in your stomach gets a boost??

It is probably worth seeing a doctor as whatever it is is likely to be minor and treatable if really feeling quite bad!

Thanks, Gfp, that does make sense as a possibility and thanks for your knowledge. I guess I have very little faith in doctors after they couldn't diagnose me for 7 years, but maybe it's time to ask around for a good one, give it another try, and see if I can figure that out. I suppose it could be something like a parasite (yuck) and I have thought lately that it may well be a yeast problem - Before that, I just assumed that I was one of those people that couldn't tolerate sugar once the gluten problem kicked in. Again, I really appreciate the help. :)

OptimisticMom42 Apprentice

Are you taking B12 and probiotics?

Try googling B12 - yeast - B12 helped get rid of my yeast problem.

probiotics - yeast

motility - magnesium

There is even a drink made from maple syrup and lemon juice that cleans you out that I enjoyed and found soothing. It has a weird side effect of making your tongue white for a couple of days though (something about cleaning the liver out).

gleegan Rookie
Are you taking B12 and probiotics?

Try googling B12 - yeast - B12 helped get rid of my yeast problem.

probiotics - yeast

motility - magnesium

There is even a drink made from maple syrup and lemon juice that cleans you out that I enjoyed and found soothing. It has a weird side effect of making your tongue white for a couple of days though (something about cleaning the liver out).

I bought probiotics, but haven't started taking them yet. I know it's dumb, but I'm afraid to put anything new in my body even if I think it might help - because I've had so many problems with things I ingest. I did make sure the ones I bought were dairy-, soy-, and gluten-free, so I will just take the plunge and try - thanks for your hopeful words. I avoid yeast now - I really think that might be the problem or one of the major problems.

Maple syrup did a number on me a while ago - it seems that natural sugars are a huge problem for me, too (fruit included), but thanks.

Never thought about B12, but being a long-time vegetarian, I think I'm supposed to be taking that anyway.

Thanks for your kind help!!! :)

gfp Enthusiast
Thanks, Gfp, that does make sense as a possibility and thanks for your knowledge. I guess I have very little faith in doctors after they couldn't diagnose me for 7 years, but maybe it's time to ask around for a good one, give it another try, and see if I can figure that out. I suppose it could be something like a parasite (yuck) and I have thought lately that it may well be a yeast problem - Before that, I just assumed that I was one of those people that couldn't tolerate sugar once the gluten problem kicked in. Again, I really appreciate the help. :)

I share your feelings on doctors: however some stuff is mainstream and even a poor doctor can follow the diagnostic processes.

Parasites might be yuck ... but they are also usually/often easily treatable and curable.

Often this involves drugs and therefore the drug companies ensure doctors have the information as opposed to diagnosing celiac disease. Anyway, its worth a go if its easily treatable and makes your life better!

still tiredofdoctors Rookie

I am so sorry that you are going through this. Although awareness of celiac disease in general has increased dramatically since I was diagnosed in 2005, I think the actual understanding of it as an autoimmune disease -- and some of its ramifications -- still has a way to go.

I have "Neurogenic celiac" -- or "Sprue-Related Ataxia" -- or "Gluten Ataxia" . . . depending upon the physician with whom you speak! Basically, it it destroys one protein of the Purkinje cell in the cerebellum. Unfortunately, it wreaks havoc with my autonomic nervous system.

My son is 27 years old and lives in Houston. While he had an endoscopy and colonoscopy, and we THOUGHT the physician who was in the process of diagnosing him was being very pro-active with regard to possible celiac, we found out that no blood work or testing of any other kind was done concerning it.

It just happened that this MD was out and his partner "filled in" during my son's visit. He "went off" was my son's description when he found out that nothing was done with regard to celiac despite my confirmed diagnosis. Because his villi were healthy, no lab work was completed. It is definitely a BACKWARD way to diagnose.

My son is now being tested for celiac as well as a plethora of metabolic disorders. I do have "malabsorption syndrome" as well as some metabolic syndrome. Both of these started AFTER I sero-converted to true celiac. He was told that often celiac patients DO have metabolic changes, and was told to start taking an Omega-9 supplement (we laughed - I was finally told last year that I needed that!) and was also told to take a tablespoon of olive oil prior to each meal. This was on Wednesday of last week, and I haven't heard whether he has had any success! If you'd like, I'll keep you posted through PM's . . .

Additionally, yeast issues -- according to my pharmacist who also got a doctorate in homeopathy -- abound in celiacs. He recommends taking an acidophilus / lactobaccilus (sp?) supplement daily. My personal physician has me take four times the recommended amount (I also have several other conditions that require me to be on a LOT of antibiotics right now). I take Culturelle IgG -- two capsules two times daily. It has made a real difference with regard to clogging.

I also forgot this part -- because of the autonomic component that I have with the celiac . . . and oddly they found this with my son during his colonoscopy -- we both have issues with large intestine "spasm", and mine has been diagnosed also as "spasticity". He was given .5 mg of Klonopin to take 1/2 hour prior to eating to reduce that. I take 1 mg three times per day (also to control seizure activity as well, though), and I also take 20 mg of Baclofen as needed for either gut or skeletal muscle spasticity. I still find it unbelievable that one hour after taking the Baclofen, even if it has been DAYS that I have been "clogged" -- I will begin to have very normal movements. SEVERAL very normal movements that are . . . . ummm . . . . well--- toilet-clogging. (So make sure that you are at home if your MD starts you on this!)

I hope that I have not provided WAY too much personal information(!), but I also know that it appears, at least with both my son and me, that celiac sometimes isn't an "isolated" diagnosis.

I hope this issue resolves as quickly as possible for you. Please know that living a gluten-free lifestyle doesn't mean bland food forever . . . it gets better and better.

Best of luck,

Lynne

  • 2 weeks later...
glutefree Rookie

I am self-diagnosed Celiac since March of 2007 (doctors couldn't figure it out, so I finally did); I have learned a lot from this forum, but this is the first time I'm posting (and maybe I should have started a new subject instead of continuing on Jason's thread, but I have a similar situation so I hope that's ok...). As soon as I cut out gluten a couple of years ago, the difference was total and I was finally feeling healthy. However, once or twice a year, I stupidly eat a tiny bit of sugar (which is apparently a huge problem for my gut) and my whole system gets thrown out of whack. Each time it happens, new foods are suddenly undigestable, like mushrooms, onions, bell peppers...the list goes on. It's become very frustrating to put it mildly, but I do the best I can and when I'm more or less healthy, I deal ok with it. However, I ate ONE soy-free, dairy-free, gluten-free brownie recently (that I made myself) and it's started ALL OVER AGAIN. Somewhat similar to Jason, I can only eat a few things when my system is messed up like this: corn, potatoes, eggs, and rice. I guess my question, besides just venting, is whether or not anyone else goes through this and, if I eat this bland diet for a while but this time throw in a few mild curve balls like tomato sauce and peanut butter (which I normally CAN have), will the gut heal but just more slowly than on a total elimination diet? I'm not trying to be a baby; i am just FED UP with eating four things only for months whenever this happens. I would actually rather be a bit happier with my meals and suffer with my gut a month longer if possible. Does this make sense? I swear, though, I will never touch sugar again - I'm starting to believe it's evil incarnate (or for me it is anyway)! Any help would be appreciated.

I have the same problem- I will go along fine and then bam all of a sudden I can only eat very limited foods. I just elimated dairy and I ate a vinegar based salad dressing and got a mouth full of cankersores. I digress here, but I think it comes down to the fact that celiac disease is an autoimmune disease. The body attacks itself and while still on a gluten free diet, I believe that I can have a period of time where the disease is more prevalent. This would be like people with lupus who are fine some days and then all of the sudden have a period of time where they are not. I think the key is to figure out what causes this "attack" on your body. Unfortunately for me, it may be minute particles of gluten getting snuck into my system causing an episode.

gleegan Rookie

I have the same problem- I will go along fine and then bam all of a sudden I can only eat very limited foods. I just elimated dairy and I ate a vinegar based salad dressing and got a mouth full of cankersores. I digress here, but I think it comes down to the fact that celiac disease is an autoimmune disease. The body attacks itself and while still on a gluten free diet, I believe that I can have a period of time where the disease is more prevalent. This would be like people with lupus who are fine some days and then all of the sudden have a period of time where they are not. I think the key is to figure out what causes this "attack" on your body. Unfortunately for me, it may be minute particles of gluten getting snuck into my system causing an episode.

When I'm not doing too well, I have to avoid vinegar, including ketchup (there is also a bit of sugar in that, though I have recently found a kind that uses agave instead and it's probably pretty easy to make at home anyway). Because of the responses that people gave here, I finally tried probiotics. I haven't taken the capsules yet, but I stumbled on to a fermented Chinese tea (sold in bottles that are refrigerated in health stores - GT's raw, organic Kombucha). I did some research online and people rave about it. It tastes absolutely vile at first (like vinegar, actually), but online people kept saying that it's an acquired taste, so I kept drinking half a bottle a day. I really feel like it's helped a lot when nothing else was. It also has B vitamins and some acids that the stomach needs. Maybe this can help you too? The bottles can be a bit pricey, but if they make me feel better, I'm ok with it. It finally stopped the crazy gurgling in my stomach and my digestion is getting close to normal again, though I'm only very slowly branching out of the elimination diet. I also quit coffee at the same time, so that may be helping too, but I really feel like it's the Kombucha.

I understand what you mean about minute particles - I am also really susceptible to cross contamination, so much so that I can barely eat out. Good luck to you; I hope you feel better soon.

glutefree Rookie

When I'm not doing too well, I have to avoid vinegar, including ketchup (there is also a bit of sugar in that, though I have recently found a kind that uses agave instead and it's probably pretty easy to make at home anyway). Because of the responses that people gave here, I finally tried probiotics. I haven't taken the capsules yet, but I stumbled on to a fermented Chinese tea (sold in bottles that are refrigerated in health stores - GT's raw, organic Kombucha). I did some research online and people rave about it. It tastes absolutely vile at first (like vinegar, actually), but online people kept saying that it's an acquired taste, so I kept drinking half a bottle a day. I really feel like it's helped a lot when nothing else was. It also has B vitamins and some acids that the stomach needs. Maybe this can help you too? The bottles can be a bit pricey, but if they make me feel better, I'm ok with it. It finally stopped the crazy gurgling in my stomach and my digestion is getting close to normal again, though I'm only very slowly branching out of the elimination diet. I also quit coffee at the same time, so that may be helping too, but I really feel like it's the Kombucha.

I understand what you mean about minute particles - I am also really susceptible to cross contamination, so much so that I can barely eat out. Good luck to you; I hope you feel better soon.

Gleeglan, Thanks so much for the support. I unfortunately have found that I have an ulcer and thus everything isn't doing well. I am going to take your probiotic advice. One thing with being celiac is the cost is not an issue when it comes to food/vitamins if it makes my health better. I often wonder if the probiotics are key to restoring a more healthy balance. I also think that vinegar in small doses might be better too.

Keep me in the loop if you have any other tips!

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    • trents
      I would ask the GI doc about the elevated IGA score of 401. That one is what we commonly refer to as "total IGA" and also known as "Immunoglobulin A (IgA)". It could be nothing but it can also indicate some other health issues, some of them serious in nature. I would google potential causes for that if I were you. Also, if there is a chance the GI doc will want to do more testing for celiac disease, either antibody testing or an endoscopy with biopsy, you should not cut back on gluten consumption until all celiac disease testing is done. Otherwise, you will invalidate the testing.
    • shell504
      Hello. I apologize. I didn't know there wasn't a standard.  The standard listed  for the IGA is normal range 47-310.  The others were all listed as <15.0 u/l is antibody not detected and 15> antibody is detected.  And the negative one the standard is negative.  It is a normal PCP dr. I do have a second opinion appt scheduled with a GI specialist in 2 weeks. Honestly, I haven't cut out gluten at all. I just switched to whole fibers and everything has been getting better. She wanted to do the test just to check, which I was fine with. We'll see what the GI dr says. Thank you for commenting. 
    • trents
      It is also possible that since eating the fries you have been glutened again during the week. I would double check the food in your cupboard and reread the ingredient lists. Food companies can and do change their formulations from time to time such that something that used to be gluten free is no more. What I am saying is, don't assume the distress you are experiencing comes from one incident of glutening. There could, coincidentally, be another one on it's heels. 
    • trents
      Welcome to the forum, @shell504! The IGA 401mg/dl is not a test for celiac disease per se but a check to see if you are IGA deficient. People who are IGA deficient will produce celiac blood test antibody scores that are artificially low which can result in false negatives for the individual antibody tests such as the TTG IGA. You did not include reference ranges along with the test scores and since each laboratory uses custom reference range scales, we cannot comment with certainty, but from the sheer magnitude of the IGA score (401) it does not look like you are IGA deficient. And since there are no annotations indicating that the other test scores are out of range, it does not appear there is any antibody evidence that you have celiac disease. So, I think you are warranted in questioning your physician's dx of celiac disease. And it is also true that a colonoscopy cannot be used to dx celiac disease. The endoscopy with biopsy of the small bowel is the appropriate procedure for diagnosing celiac disease. But unless there is a positive in the antibody testing, there is usually no justification for doing the endoscopy/biopsy. Is this physician a PCP or a GI doc? I think I would ask for a second opinion. It seems as though this physician is not very knowledgeable about celiac disease diagnositcs. Having said all that, it may be that you suffer from NCGS (Non Celiac Gluten Sensitivity) rather than celiac disease. The two gluten disorders share many of the same GI symptoms. The difference is that NCGS does not damage the villous lining of the small bowel as does celiac disease. NCGS is 10x more common than celiac disease. The antidote for both is complete abstinence from gluten. Some experts believe NCGS can be a precursor to the development of celiac disease. There is not test for NCGS. Celiac disease must first be ruled out. So, if it becomes apparent that gluten is causing distress and testing rules out celiac disease, then the diagnosis would be NCGS. Hope this helps. 
    • shell504
      I apologize i can't figure out how to get the picture on here.  Results were: IGA 401mg/dl Deamidated Gliadin IGG. <1.0 Deamidated Gliadin IGA. <1.0 Tissue Transglutaminase IGA AB. <1.0 Endomysial IGA. Negative.  Is she just going based off of the IGA alone? And because that is elevated, it's positive? The test states: "Results do not support a diagnosis of celiac disease." 
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