When Will I Feel Better? How Long Does It Take ?

[just trying to feel better]

I was diagnosed in February of 2010 after being sick for 3 weeks and losing 25 pounds. First two months were horrible, suffering from withdrawals, then started feeling great (being Italian it was very hard for me) but I never cheated and continue to eat only Gluten free and I am actually getting used to it.

Now starting to feel the same as I did before I was diagnosed, tired, bloated and stomach cramps. New symptom is acid reflux (Yeah) especially when I lay in bed.

How long does it typically take to feel better or will I have these high and lows from now on?

[lucia]

You may be experiencing a secondary form of food intolerance. The symptoms of such food intolerances will often appear only after we stop eating gluten. Common ones include dairy (or caesin), soy, corn, and nightshades, although there are many possibilities.

To determine if that's the case, a lot of people do an elimination diet. You can find resources for that here on the site. Another option is to track your food intake against your symptoms and look for commonalities.

In my own case, I noticed that my symptoms for my soy and dairy intolerances are different than what they are with my gluten intolerance. For one thing, the symptoms when I ingest either soy or dairy don't last as long as the symptoms I get when I eat gluten.

[T.H.]

Sorry to hear that you've been hitting a low area!

My experience is admittedly limited, but most people that I hear of who have a bad patch, go up and then down again, have something else going on. These are most of the reasons I've heard.

1. An unexpected source of gluten has entered their life. Someone else's lipstick, a new dishwasher soap that isn't getting fully rinsed off, drywall dust (has gluten) near some new construction. Sources that might enter your mouth as you inhale or touch your lips, you know?

2. A lot of celiacs I've read about become more sensitive to gluten after they go gluten free, so possibly there could be some cross-contamination/gluten somewhere that was in too low amounts to bother you before, but might be enough to upset your body now. They have a home test for gluten, now, and I have read that some people who have been testing their food are finding that they are reacting to levels of gluten that are low enough to still legally be called 'gluten free.' Perhaps trying to eat 'from scratch' cooking with whole grains and no mixes for a little while might help to determine if this might be an issue?

3. Could be dairy. Many celiacs become dairy intolerant until they heal up fully, and it can impede their progress until they drop dairy for a little while.

4. Could be other food allergies/sensitivities/intolerances. Celiacs are prone to more food allergies than the general population, so this is an issue that can crop up at any time. Also, with the damage to our gut, we are more likely to develop sensitivities or intolerances. This applies to dyes and food additivies as much as foods. A food journal, tracking all ingredients and how you feel, might help you track it down.

5. Could be something else related to vitamin defiencies. As an adult diagnosed celiac, you have a higher risk of issues with your organs having damage from long-term deficiencies. Considering it's your gut, mostly, I would imagine that it would be one of the previous issues instead of this, but this is always a possibility, too.

Good luck in figuring this out!

[Mari]

It is true that many of us become very sensitive to gluten a while after going gluten-free. Last Nov. I had a severe reaction from being in the same place as a large pot of boiling spaghetti - it took about 5 months for the last problem, dry itchy skin - to clear up.

After my own experiences and reading a lot online I does seem the body's immune system has been supressing the autoimmune reaction to some extent and probably supressing other intestinal problems as well. We probably have had a mixture of toxin producing bacteria, yeasts and parasites and now we begin to have more symptoms from these invaders. Or maybe the change-over from gluten foods to a gluten-free diet has allowed these invaders to come in during this time of change and healing of our villi. In some people this passes as they heal and are better able to protect themself. Other people have found medical treatments which are getting better and better at identifying the organisms causing the problems and treating them. I use a variety of herbal/natural remedies and the Specific Carbohydrate Diet. It is very important to take a probiotic or yogurt with both Acidophilis and Bifidobacterium to put back good bacteria in the intestine. Many celiacs have developed gall stones and there are several natural methods of getting them out and improving the bile pool and pancreatic enzyme release into the small intestine. It may help you to take either HCl drops or Betaine HCl with meals, eat fiber (I use gluten-free oat bran) with all meals, drink at least 5 glasses of water a day and and look at the Curezone Liver Flush Support Forum - even tho you may not do these programs they will give you information on how your digestive system should work.

[Coolclimates]

I'm having a similar issue. I was diagnosed with celiac disease in May. I have been on the gluten-free diet since early May, yet have not had any relief. I never had the stomach and GI issues except acid reflux and some weight loss. My other main issues are fatigue, insomnia, restless legs, anxiety/depression, sinus congestion (pollen allergies?), back problems and more. I am also wondering if I have more food allergies. I got some blood drawn to check for allergies to dairy, soy, etc but I'll be out of the country by the time the results come back in. I just can't tell what's going on right now. Also, I don't have a bad reaction after I've been glutened. At least so far. I know I've made some mistakes in my diet, but honestly can't tell if I have because I feel about the same regardless.

I just spoke to my doc today and he was a little befuddled that I haven't started feeling better by now. But on the other hand, he's not an expert with celiac disease. I'll be seeing another GI when I get back to the country.

Very frustrating. I have so many questions and so few answers!

[just trying to feel better]

You may be experiencing a secondary form of food intolerance. The symptoms of such food intolerances will often appear only after we stop eating gluten. Common ones include dairy (or caesin), soy, corn, and nightshades, although there are many possibilities.

To determine if that's the case, a lot of people do an elimination diet. You can find resources for that here on the site. Another option is to track your food intake against your symptoms and look for commonalities.

In my own case, I noticed that my symptoms for my soy and dairy intolerances are different than what they are with my gluten intolerance. For one thing, the symptoms when I ingest either soy or dairy don't last as long as the symptoms I get when I eat gluten.

Thank you, I have heard that sometimes you become intolerant to dairy products. I see my doctor this week and I will work on seeing if eliminating these help.

[just trying to feel better]

Sorry to hear that you've been hitting a low area!

My experience is admittedly limited, but most people that I hear of who have a bad patch, go up and then down again, have something else going on. These are most of the reasons I've heard.

1. An unexpected source of gluten has entered their life. Someone else's lipstick, a new dishwasher soap that isn't getting fully rinsed off, drywall dust (has gluten) near some new construction. Sources that might enter your mouth as you inhale or touch your lips, you know?

2. A lot of celiacs I've read about become more sensitive to gluten after they go gluten free, so possibly there could be some cross-contamination/gluten somewhere that was in too low amounts to bother you before, but might be enough to upset your body now. They have a home test for gluten, now, and I have read that some people who have been testing their food are finding that they are reacting to levels of gluten that are low enough to still legally be called 'gluten free.' Perhaps trying to eat 'from scratch' cooking with whole grains and no mixes for a little while might help to determine if this might be an issue?

3. Could be dairy. Many celiacs become dairy intolerant until they heal up fully, and it can impede their progress until they drop dairy for a little while.

4. Could be other food allergies/sensitivities/intolerances. Celiacs are prone to more food allergies than the general population, so this is an issue that can crop up at any time. Also, with the damage to our gut, we are more likely to develop sensitivities or intolerances. This applies to dyes and food additivies as much as foods. A food journal, tracking all ingredients and how you feel, might help you track it down.

5. Could be something else related to vitamin defiencies. As an adult diagnosed celiac, you have a higher risk of issues with your organs having damage from long-term deficiencies. Considering it's your gut, mostly, I would imagine that it would be one of the previous issues instead of this, but this is always a possibility, too.

Good luck in figuring this out!

Thanks you so much for all the info, never thought about make-up or other household items, just thought it was a food issue. I need to really educate myself on other items around me. I do know that my vitamins are gluten free (I called the company to make sure) Thanks again

[just trying to feel better]

It is true that many of us become very sensitive to gluten a while after going gluten-free. Last Nov. I had a severe reaction from being in the same place as a large pot of boiling spaghetti - it took about 5 months for the last problem, dry itchy skin - to clear up.

After my own experiences and reading a lot online I does seem the body's immune system has been supressing the autoimmune reaction to some extent and probably supressing other intestinal problems as well. We probably have had a mixture of toxin producing bacteria, yeasts and parasites and now we begin to have more symptoms from these invaders. Or maybe the change-over from gluten foods to a gluten-free diet has allowed these invaders to come in during this time of change and healing of our villi. In some people this passes as they heal and are better able to protect themself. Other people have found medical treatments which are getting better and better at identifying the organisms causing the problems and treating them. I use a variety of herbal/natural remedies and the Specific Carbohydrate Diet. It is very important to take a probiotic or yogurt with both Acidophilis and Bifidobacterium to put back good bacteria in the intestine. Many celiacs have developed gall stones and there are several natural methods of getting them out and improving the bile pool and pancreatic enzyme release into the small intestine. It may help you to take either HCl drops or Betaine HCl with meals, eat fiber (I use gluten-free oat bran) with all meals, drink at least 5 glasses of water a day and and look at the Curezone Liver Flush Support Forum - even tho you may not do these programs they will give you information on how your digestive system should work.

Thank you for your information. I do take a prescription probotic, I dont have my gallbladder that was removed in 1990 and the misdiagnoses of IBS. I only drink water, very rare I drink anything else. I will look into the Curezone Liver Flush, I know my doctor is concerned about my liver because I have had two scans so far and blood work. I will ask him when I see hime this week. Thanks again