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      Frequently Asked Questions About Celiac Disease   09/30/2015

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Gluten Free For 3 Months, Not The Slightest Bit Better?
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10 posts in this topic

Hi, I'm 19 and I was diagnosed with Celiac Disease since February. I started eating strictly gluten free in March, it is now June, almost July, and I'm not feeling the slightest bit better or have had any changes in my quality of life. 

 

(Strictly gluten free means my family and I use completely separate plates/utensils/pans when preparing my food, I closely read the label on everything I put in my mouth, and when I go out to eat which is pretty rare because I'm scared of getting gluten by accident, I grill the waiter on what's in my food.) 

 

On top of this, recently, I've stopped eating processed "Gluten-Free" food. I've skipped consuming gluten free bread, pasta etc and decided to eliminate these types of food all together, wondering if my stomach is just sensitive to that type of food in general. No relief. 

 

My symptoms include stomach cramping, bloating, severe anemia and various other vitamin deficiencies including folic acid, migraines, muscle and joint pain, brain fog and general fatigue. Like I've said before, none of these symptoms have gotten better since starting the diet. I was expecting to feel at least some relief a long time ago. 

 

Also, I've started to notice that I've developed some sort of intolerance to sugar/fructose. If I have a bite of a gluten free cookie or sugar in my tea, my stomach is a wreck for hours. 

 

I've recently gone back to my doctor and he's started to test me for a lot of other things with blood work and an ultra-sound, and as of now he hasn't seen any glaring problems in either. He says if he can't find anything in those tests, he's going to do a colonoscopy to figure out if everything is okay with my colon/bowel. 

 

Its very tiring and unrewarding to follow this strict regimen and still be sick as ever, and its concerning that a medical doctor doesn't even know why I feel so awful, after all this time and hundreds of tests. 

 

I don't want to whine or pity myself, but I just want to feel like a normal college kid and be able to keep up with people my age without feeling like pure garbage. 

 

If anyone has any tips with what I could try to do, what might be wrong, or what could maybe sooth any of my symptoms they'd be greatly appreciated. 

 

Thanks,

Gabrielle

 

 

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Hi, I'm 19 and I was diagnosed with Celiac Disease since February. I started eating strictly gluten free in March, it is now June, almost July, and I'm not feeling the slightest bit better or have had any changes in my quality of life. 

 

(Strictly gluten free means my family and I use completely separate plates/utensils/pans when preparing my food, I closely read the label on everything I put in my mouth, and when I go out to eat which is pretty rare because I'm scared of getting gluten by accident, I grill the waiter on what's in my food.) 

 

On top of this, recently, I've stopped eating processed "Gluten-Free" food. I've skipped consuming gluten free bread, pasta etc and decided to eliminate these types of food all together, wondering if my stomach is just sensitive to that type of food in general. No relief. 

 

My symptoms include stomach cramping, bloating, severe anemia and various other vitamin deficiencies including folic acid, migraines, muscle and joint pain, brain fog and general fatigue. Like I've said before, none of these symptoms have gotten better since starting the diet. I was expecting to feel at least some relief a long time ago. 

 

Also, I've started to notice that I've developed some sort of intolerance to sugar/fructose. If I have a bite of a gluten free cookie or sugar in my tea, my stomach is a wreck for hours. 

 

I've recently gone back to my doctor and he's started to test me for a lot of other things with blood work and an ultra-sound, and as of now he hasn't seen any glaring problems in either. He says if he can't find anything in those tests, he's going to do a colonoscopy to figure out if everything is okay with my colon/bowel. 

 

Its very tiring and unrewarding to follow this strict regimen and still be sick as ever, and its concerning that a medical doctor doesn't even know why I feel so awful, after all this time and hundreds of tests. 

 

I don't want to whine or pity myself, but I just want to feel like a normal college kid and be able to keep up with people my age without feeling like pure garbage. 

 

If anyone has any tips with what I could try to do, what might be wrong, or what could maybe sooth any of my symptoms they'd be greatly appreciated. 

 

Thanks,

Gabrielle

It can take up to two years for any damage to heal.

 

Take vitamins for any low vitamin levels you have, take a pro-biotic, and take it easy is all i can suggest.

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I agree with taking a good quality probiotic.  Have you been tested for fructose malabsorption?

 

http://theceliacmd.com/fructose-malabsorption-is-is-the-cause-of-my-tummy-troubles/

 

good luck!

 

 

 

Also, I've started to notice that I've developed some sort of intolerance to sugar/fructose. If I have a bite of a gluten free cookie or sugar in my tea, my stomach is a wreck for hours. 

 

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Have you been tested for food allergies?  I'm allergic to rice, for instance and I thought I was intolerant of starches and I also react to sugars. I also can't drink tea with honey. I don't know whether it's the tea or the honey but I'm afraid to try it again after the reaction I had.   Try to keep a food journal for a few days too to pinpoint what makes you feel worse. 

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30 years of undeniable symptoms and super-sensitive viewpoint:

 

I was in the same boat after about two months gluten free; I tried grain free and struggled for another 3 months.  You don't have to know everything at once, but as you walk on, you should be getting somewhere.  Some of my hardest days were followed by my highest.  I am now a year into grain free and am having a clear mind, more energy, and am feeling stronger.

 

You can optimize healing, in my opinion, by:  My experience is using natural physicians, so much of my ideas come from there:

 

Continuing to find gluten in products you are using:  food and otherwise.  Consider cooking in a separate location.  I am hoping to picture my make shift kitchen soon.  You can do it, if you need to.

Be aware of whether foods are produced where wheat is processed.

Cut out junk from your diet.

Get enough protein, Meat and fish are good sources for now.

Consume good fats with each meal:  Olive oil and Coconut oil will help you feel full and give more energy.

Get some sunshine and fresh air daily.  This in particular helps perk me up!

Find out what nutrients you are low in and take supplements.

Take digestive enzymes to help break down your food until your body heals enough to do it!

Find and consider what other food intolerances you have.  This helped me immensely.

Try to take a nap at 1 pm if possible.  Sleep from 10 pm to 7 am to help recover.

WAIT:  Give it more time, but don't stop figuring it out and walking toward the goal.

 

GET BETTER

 

D

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Wow all those problems and no colonoscopy as of yet? Thats one ofthe 1st things my Dr. did! Seems you may have some other things going on. Hopefully there will be answers soon! Good luck! 

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I'm sorry that you are going through this.  My daughter is 18 and having to deal with this while going to college in another city.  She finds that it makes the adjustment harder.  For example, she wasn't at all those beer drinking parties, as they were not expected to have an extra gluten free keg.  I must admit, that as her mother, I don't mind that she isn't attending hooking up drinking parties.

 

It takes some time to heal.  Nonetheless, I felt and immediate improvement when I first stopped eating gluten, but my symptoms kept returning and I realized that I was getting accidentally contaminated.  It was a process that went on for months.  After a year we decided that we needed to have a gluten free household and that reduced the contamination incidents significantly.  Then the processed gluten-free foods, as you have done.  I did a lot of challenge/elimination diets and kept a food journal.  Eventually I came up with a diet much like one used in a study to heal non responsive celiacs.

 

http://www.biomedcentral.com/1471-230X/13/40

 

"Nevertheless, despite following a strict GFD, there is a possibility that these patients are still being exposed to, and are sensitive to, a degree of gluten typically tolerated by the vast majority of celiac disease patients."

 

"The GCED, as shown in Table 1, allows: brown and white rice; all fresh (no frozen, canned or dried) fruits, vegetables and herbs; fresh meats, poultry, fish and other non-processed protein sources. Unflavored, unseasoned dairy products are introduced on week 4. Allowed condiments are oils, vinegar (excluding flavored and malt vinegars), honey and salt. Allowed beverages are 100% fruit/vegetable juices, Gatorade, milk, water, and gluten-free supplemental formulas such as Boost and Ensure. All cereal grains aside from rice are prohibited. Processed cheeses, lunch meats, ham, bacon or other such processed, self-basted or cured meat products are not allowed."

 

My elimination/challenge dieting revealed that I react to some of the things that are allowed above, but this should be a very good place to start.  I would have appreciated it if something like this had been published before I got diagnosed!

 

There was little known about celiac disease when most of the doctors practicing today went to medical school.  My GI and my son's pediatrician are very well educated and keep up with the literature, but my son's GI was really ignorant.  It might help if you share the publication I linked to above with your doctor to help him best help you.  There is a lot being done these days on this condition.  I can't believe how much more knowledge there is now than when I was diagnosed about 6 years ago.  It's hard for doctors to keep up when they are treating all sorts of other things too.

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If you will review the research at pubmed.com, and the dozens of articles, you will find there is quite the issue with whether celiacs ever recover, how much, and what to do about it. There is something called "refractory" sprue (another older name for the flat villi) that in some people, just don't heal (assuming they aren't accidentally or purposely eating wheat). So, expect it to take time and even deal with the problem you may never completely be well, it is highly individualized. In my case, I react to corn and sorghum just like it was wheat gluten. Also, I had to take a mega-B to counteract my "dry beri-beri", it helped but took time. If your bloodwork now or ever shows high calcium or low phosphorous, or you have weakening bones, then check your parathormone levels.

If you take any supplements or drugs, check them for compatibility at rxlist.com, and also, make sure what pills you consume do not have wheat starch in them (most don't, but many have corn starch).

I take two prescribed medications that help my unique damage with symptoms as you describe, one is a very low level most-common prescription pain medication, and the other is Provigil. These are tremendously important in my case (60 years of damage) but should not be trifled with if you can humanly avoid them and doctors do not like to prescribe them (and my insurance does not cover the expensive Provigil, even though it should). Since my diagnosis and healing somewhat, I have been able to reduce the amount I take. I had good success with a cheap supplement called acetyl L carnitine (energy, less fatigue) but it turns out it is one of the unique substances that blocks thyroid action, and I have a residual thyroid problem, so I stopped it. Oh...and I take 50 mg. of caffeine once in a great while (like a weak cup of coffee, I hate coffee and tea has too much salicylate for me). I buy cheap generic caffeine, then take a pill cutter to it, I find 50 mg. is all I need (caffeine itself is hard on the gut).

Consider asking (if you have insurance) for a test of your memory and cognition; that may help you establish how much neurologic damage you may have, and as a reference point for later. This is done by psychologists on referral from your doctor. Also, alert your dentist that you have celiac disease (no wheat-based product in mouth, check for dental enamel weakness).

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I forgot in my first post, one other thing I am doing that has helped. I take fish oil, 1000 mg. twice a day. I believe it is shown, especially when taken with hydrocodone in a trace amount, to tighten the junctions of the gut, thus keeping out the nasty gut proteins somewhat from getting in the bloodstream. I buy a cheap brand at Costco, which has a late-digesting feature so I never taste the fish oil. I felt like this was a quack, ridiculous, idea when I stumbled on the research when investigating stomach junctions ("leaky gut"). However, it worked to improve the gut. I also had lifelong problems with runaway cholesterol and triglicerides, and the fish oil clearly dropped those dramatically, so for me, they work and it can be shown medically. Whether they will help you, ask your doctor. Here's an example of how well known this is: http://www.ncbi.nlm.nih.gov/pubmed/21693221.

I used to take three a day, but I cut back when I read somewhere too much fish oil causes...something...bleeding, I think, and at my age, stroke risk is elevated. Take the fish oil prior to noon and evening meals, perhaps.

One other thing I do is by habit...I "rest" my gut from midnight to noon, I only eat from noon to midnight. This has seemed to also help, but may be most inadvisable in a young person especially. You may also have trouble with salicylates if your gut is still damaged, especially tea, coffee, some herbs, aspirin or pepto bismol, for example. Also, avoid carbonated beverages.

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I forgot in my first post, one other thing I am doing that has helped. I take fish oil, 1000 mg. twice a day. I believe it is shown, especially when taken with hydrocodone in a trace amount, to tighten the junctions of the gut, thus keeping out the nasty gut proteins somewhat from getting in the bloodstream. I buy a cheap brand at Costco, which has a late-digesting feature so I never taste the fish oil. I felt like this was a quack, ridiculous, idea when I stumbled on the research when investigating stomach junctions ("leaky gut"). However, it worked to improve the gut. I also had lifelong problems with runaway cholesterol and triglicerides, and the fish oil clearly dropped those dramatically, so for me, they work and it can be shown medically. Whether they will help you, ask your doctor. Here's an example of how well known this is: http://www.ncbi.nlm.nih.gov/pubmed/21693221.

I used to take three a day, but I cut back when I read somewhere too much fish oil causes...something...bleeding, I think, and at my age, stroke risk is elevated. Take the fish oil prior to noon and evening meals, perhaps.

One other thing I do is by habit...I "rest" my gut from midnight to noon, I only eat from noon to midnight. This has seemed to also help, but may be most inadvisable in a young person especially. You may also have trouble with salicylates if your gut is still damaged, especially tea, coffee, some herbs, aspirin or pepto bismol, for example. Also, avoid carbonated beverages.

 

The link given above is titled: 

"Effects of n-3 polyunsaturated fatty acids on hepatic tight junction after partial hepatectomy in rats."

It refers to the liver and not to the intestines, plus it is done on rats.

 

I would not, personally, take that to mean that taking fish oil would help my celiac disease symptoms.

 

It is really difficult to interpret all these studies.  It is impossible to be an expert in every area.

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