Gluten Free And Still Feeling Horrible

[gf-calgarian]

I was diagnosed with Celiac Disease March 6, 2012 (endoscopy confirmed). The doctors also did a colonoscopy to rule out IBS (which I don't have).

I started the gluten free diet that day, and have not purposefully consumed any gluten since. I replaced all my wooden spoons and cutting boards and got rid of everything in my house that contained gluten or could have been contaminated (like peanut butter). I even found gluten-free lip balm. I started to feel better for a little while but now I'm back to feeling pretty crappy most of the time. I can't figure out what I'm eating that could be making me feel this way. Does anyone have any tips of things I might be missing? Or is this normal when you're still healing? The doctors said that my damage was "severe" so I'm assuming that it will take a while for everything to heal.

I'm feeling pretty frustrated since I've cut out so many things (I don't eat anything that says may contain wheat, and obviously nothing with any gluten in it) and tried everything I can think of and I'm still feeling awful.

The only two people I know with celiac disease have no problem just taking the toppings off of pizza or sandwiches so I don't really feel confident taking their advice.

I try not to feel so hopeless about my new diet, but it's hard when you're feeling like all your hard work isn't doing a thing.

Thanks in advance for all your help!

[cahill]

I was diagnosed with Celiac Disease March 6, 2012 (endoscopy confirmed). The doctors also did a colonoscopy to rule out IBS (which I don't have).

I started the gluten free diet that day, and have not purposefully consumed any gluten since. I replaced all my wooden spoons and cutting boards and got rid of everything in my house that contained gluten or could have been contaminated (like peanut butter). I even found gluten-free lip balm. I started to feel better for a little while but now I'm back to feeling pretty crappy most of the time. I can't figure out what I'm eating that could be making me feel this way. Does anyone have any tips of things I might be missing? Or is this normal when you're still healing? The doctors said that my damage was "severe" so I'm assuming that it will take a while for everything to heal.

I'm feeling pretty frustrated since I've cut out so many things (I don't eat anything that says may contain wheat, and obviously nothing with any gluten in it) and tried everything I can think of and I'm still feeling awful.

The only two people I know with celiac disease have no problem just taking the toppings off of pizza or sandwiches so I don't really feel confident taking their advice.

I try not to feel so hopeless about my new diet, but it's hard when you're feeling like all your hard work isn't doing a thing.

Thanks in advance for all your help!

Have you checked any medications you take?

Are you still eating dairy ?

Do you live in a gluten free house or do you share it with gluten eaters ?

[jnh380]

I was diagnosed with Celiac Disease March 6, 2012 (endoscopy confirmed). The doctors also did a colonoscopy to rule out IBS (which I don't have).

I started the gluten free diet that day, and have not purposefully consumed any gluten since. I replaced all my wooden spoons and cutting boards and got rid of everything in my house that contained gluten or could have been contaminated (like peanut butter). I even found gluten-free lip balm. I started to feel better for a little while but now I'm back to feeling pretty crappy most of the time. I can't figure out what I'm eating that could be making me feel this way. Does anyone have any tips of things I might be missing? Or is this normal when you're still healing? The doctors said that my damage was "severe" so I'm assuming that it will take a while for everything to heal.

I'm feeling pretty frustrated since I've cut out so many things (I don't eat anything that says may contain wheat, and obviously nothing with any gluten in it) and tried everything I can think of and I'm still feeling awful.

The only two people I know with celiac disease have no problem just taking the toppings off of pizza or sandwiches so I don't really feel confident taking their advice.

I try not to feel so hopeless about my new diet, but it's hard when you're feeling like all your hard work isn't doing a thing.

Thanks in advance for all your help!

Hi Calgarian,

This post won't answer any of your questions, but I was just thinking about posting almost this exact same topic but had not gotten around to it. I was diagnosed in mid april through blood test and biopsy and have been gluten free for a little more than a month.

At first I sensed some big changes in my mood and symptoms. Now a few weeks later I feel like I did before the diagnosis even though I have cut out all the gluten, and eve dairy products. I just feel discouraged that I am not seeing all the symptoms clear up, in fact things are worse than a few weeks ago. Nausea, diarhea, stomach ache.

I am just wondering if other members who have gone through the healing process can speak up and give us their stories about how long the recovery was for them and how the symptoms lasted or dissapeared. It would help so we can see hear first hand about how long of a process this seems like it will be, I know that would help me deal with this.

[pricklypear1971]

Have either of you been tested for vitamin deficiencies? If you are deficient in something (and you probably are) you need to bring those levels up. It can make a HUGE difference.

B's, D's, iron/ferritin, cal/mag, k, e.... get them tested.

Are you using a probiotic and digestive enzyme? If no, do it. I use Enzymedica. Screen for gluten.

Are you eating enough? We all usually go through a phase of learning where safe food is and starving til we get there. Always have something with you.

The first six months are a roller coaster. Your body is trying to heal and reset and there are many hills and valleys. The journey is different for everyone.

Keep a food and symptom diary if you suspect an additional food intolerance. Look for patterns.

There are stories all over this board about recovery. You have to take the time to read them - no one can just sum it up for you. We forget half of it... Read for a while and you'll realize it isn't always cut and dry (no gluten=no problem). Your body is healing (or trying to).

Also, its normal to make mistakes in the beginning. So, you may get into gluten, have to recover, repeat. You'll get there. Going gluten-free is complicated for something as simple as "stop eating gluten".

[jnh380]

B's, D's, iron/ferritin, cal/mag, k, e.... get them tested.

My Vitamin D was on the very bottom of the normal range. Have been taking supplements

Are you using a probiotic and digestive enzyme? If no, do it. I use Enzymedica. Screen for gluten.

Just started taking a probiotic

Are you eating enough?

I think I am, but it might not be as filling as before. Lots of salads and fruits.

Keep a food and symptom diary if you suspect an additional food intolerance. Look for patterns.

I have kept one since April 17th, the day after my endoscopy.

There are stories all over this board about recovery. You have to take the time to read them - no one can just sum it up for you.

I know they are there, and I guess its a little selfish to expect people to come to one thread and rehash them. I guess I was just looking for some reassurance that its rocky in the beginning and that one month on gluten-free diet may not make a drastic change.

Thanks for your response.

[pricklypear1971]

My Vitamin D was on the very bottom of the normal range. Have been taking supplements

Just started taking a probiotic

I think I am, but it might not be as filling as before. Lots of salads and fruits.

I have kept one since April 17th, the day after my endoscopy.

I know they are there, and I guess its a little selfish to expect people to come to one thread and rehash them. I guess I was just looking for some reassurance that its rocky in the beginning and that one month on gluten-free diet may not make a drastic change.

Thanks for your response.

It's not selfish, but it is rather unrealistic. Not because people won't share...but because there are so many stories here, so varied, and I'm not kidding when I say we forget half of it.

I swear some days I thought I'd sprout feathers.

[bartfull]

By three weeks in I was feeling fantastic! Then the other food intolerances set in. It's been almost a year now and through trial and error, I THINK I am finally getting better, but still not as much energy as I felt that magical third week. Maybe someday...

[1desperateladysaved]

I have been taking many supplements for 5 years that I was tested as needing. These stopped my blood pressure from plummeting when I stood up. Many other dramatic and good changes took place, However, there seemed to be a missing piece. That is when with the help of my chiropractor I considered a gluten free diet. Over the first 5 days on a traditional gluten free diet I felt really good . After the 5 days I began to feel more normal. I felt irritable, tired, and light headed. I went through 2-3 months of what I considered withdrawl symptoms. I finally felt better than I had been 3 months back, but still not clear headed and strong consistently.

Next, I decided to try totally grain free. There followed 5 days of feeling very strong and good, followed by a dive into dizziness, fatigue and foggy head. I am thinking this brings us up to date and I have been grain free about 1 month. I am doing what I call swinging. I feel really up today, but Saturday I was depressed and irritable. This put me in a state of hopelessness.

By up I mean that I feel physically strong, clear headed, and content. Yes, there was a high cost to going grain free, but when one feels so much better the cost is okay. I know I am probably in for some more swings, but I am happy with it today.

Hang in there.

My MD said it would be 6 months before I would stop driving my family crazy with little discussions on Celiac recovery. That makes me think that she believes it will take that long for most recovery to take place. I think some recovery will take longer. Some have been saying 2 years.

[jnh380]

By three weeks in I was feeling fantastic! Then the other food intolerances set in. It's been almost a year now and through trial and error, I THINK I am finally getting better, but still not as much energy as I felt that magical third week. Maybe someday...

Sounds about right. I was feeling much better 2 weeks ago, then it slowly crept back. Now I am looking into the other foods, such as milk, cheese, coffee, nuts, etc. to see if removing any of them helps me.

[bartfull]

Check out this thread:

[cahill]

Hang in there guys, It does get better.

This ride has a lot of ups and downs, some times it is two steps forward and three steps back,

but give your body what it needs and it will heal .

((( HUGS)))

[gf-calgarian]

Have either of you been tested for vitamin deficiencies? If you are deficient in something (and you probably are) you need to bring those levels up. It can make a HUGE difference.

B's, D's, iron/ferritin, cal/mag, k, e.... get them tested.

Are you using a probiotic and digestive enzyme? If no, do it. I use Enzymedica. Screen for gluten.

Are you eating enough? We all usually go through a phase of learning where safe food is and starving til we get there. Always have something with you.

The first six months are a roller coaster. Your body is trying to heal and reset and there are many hills and valleys. The journey is different for everyone.

Keep a food and symptom diary if you suspect an additional food intolerance. Look for patterns.

There are stories all over this board about recovery. You have to take the time to read them - no one can just sum it up for you. We forget half of it... Read for a while and you'll realize it isn't always cut and dry (no gluten=no problem). Your body is healing (or trying to).

Also, its normal to make mistakes in the beginning. So, you may get into gluten, have to recover, repeat. You'll get there. Going gluten-free is complicated for something as simple as "stop eating gluten".

All my vitamin/mineral levels are normal as of 1 month pre-diagnosis. I'm not using any enzymes. I think (hope?) I'm eating enough. There was a couple weeks after I was diagnosed that I felt ravenous all the time, which was strange for me because I usually don't eat big meals, but that's gone back to normal. I should probably start a food journal. I haven't cut anything else out other than gluten, I guess I just don't want to know that I need to restrict my diet anymore than I already do (I'm a vegetarian too).

I have read quite a few other threads about newly diagnosed celiacs as well as 3 different books about going gluten free and it seems like every article on the internet about it. I was hoping it would be less complicated, but I'm quickly learning that gluten-free is not simple thing.

Thank you very much for your help

[Bubba's Mom]

I had the initial clearing of some symptoms, followed by what seemed like reactions to other things. With my food log I found I was very intolerant of soy, then dairy. Those 2 are common, so be aware of them. Many Celiacs have to remove those 2, but can add them back once healed.

If you had severe damage it will take time to heal. I started out with severe damage and was told to expect a minimum of 6 months to see improvement. I didn't. I continued to lose weight from the day I was DXed. I was rescoped and the findings showed no healing, but in fact..more damage. Through testing with a hydrogen breath test it was found I had a severe small intestine bacterial overgrowth. (SIBO), which is now being treated.

In was told that if one reacts to more and more foods,while being very strictly gluten-free it may be because of SIBO? The bacteria feed on what was ingested and emit toxins as they eat it up.

Give yourself time, relax,listen to good music, watch funny movies, do things that bring you joy. Try to picture those little villi growing, and healing will come.

If things don't slowly improve, then ask about a hydrogen breath test.

(((hugs)))