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Gluten-Free is my last hope. Any help, suggestions welcome!

Forman337

By Forman337
in Coping with Celiac Disease

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Forman337 Apprentice
Forman337
Posted

I'm new to this site but have been using a lot lately trying to solve the mystery of my illness. I've been sick for over 4 years. I've had stomach problems my whole life but 4 years ago I woke up one morning sicker than I've ever been in my life and all these years since I have not fully better.

I was tested for everything the doctor could think of, I went for tests twice a week for two months. But I don't remember them ever testing me for Celiac Disease or gluten intolerance, or even mentioning it's existence. The doctor told me that the stomach problems were being caused by anxiety and he referred me to a psychiatrist.

I was put on Lamictal, Remeron, and Ativan and they helped with the anxiety, but not with the stomach problems.

Going back to the doctor they ran more tests which all came back negative, and they said I may have Irritable Bowel Syndrome. The symptoms I have are much more severe than any IBS sufferer I can think of.

I gave up on doctors and decided to try a gluten free diet to see what would happen.

It definitely changed the way I'd been feeling, but I can't tell if it's better or worse.

For 4 months after going gluten free I got worse. Much worse. So I did some research on gluten free food and realized half the stuff I'd been eating wasn't gluten free. I also have lactose intolerance, so that makes things more difficult food-wise. I also realized that I needed a separate toaster and microwave and cookware, etc. to prevent cross-contamination.

So I've been truly gluten free for only a month or two.

But then a few weeks ago I ate some candy I assumed was gluten free but was not. I lost 20 pounds in 4 days and I was so sick I couldn't do anything but sit and watch TV. So sick I couldn't sleep for two nights straight.

I've been better from that gluten poisoning for a couple weeks but every so often I get a wave of symptoms that lasts a couple of hours then goes away.

The other thing I noticed when I went gluten-free is that I don't get sick immediately after eating anymore (most of the time anyway). I can eat a meal and not feel horrible afterward. The downside is that since I've gone gluten free I've woken up in the morning and started dry heaving a few times. That never happened before I went gluten-free.

I also can't seem to get rid of a constant feeling of hunger that sometimes gets to the point of making me feel ill.

I don't know if all these symptoms are normal, but it can't all be caused by anxiety either. No doctor can find anything wrong with me in the past 4 years.

The gluten-free diet is my last hope of getting better. I'd love to hear suggestions, comments, shared experiences. Wondering if anyone with Celiac has experienced these problems.

Any advice is much appreciated! Thanks!

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GFinDC Veteran
GFinDC
Posted

Welcome to the group Forman! :)

Your story is, regrettably, very similar to many of us.  Doctors are often slow to test for celiac disease.  It can take years for people to get diagnosed.  Mostly because doctors won't test for the condition.

Anyhow, once you go gluten-free, the antibodies in your body start to decline, and then it is too late to test for the condition.  Without resuming eating gluten again anyway, and that is not fun.  The other test they do is an endoscopy of the small intestine and take biopsy samples for microscopic examination.

One problem celiacs can have is a lack of certain vitamins in their bodies.  Gut damage interferes with the absorption of vitamins and minerals we need for our bodies to heal and work.  So it's a good idea to have your vitamin levels checked anyway.

It can be tricky learning to eat gluten-free.  Gluten is in many processed foods where you might not expect it.  I think it is simpler and safer to start by eating a diet of whole foods that you cook at home yourself.  That way you know what ingredients are in your food.  A simple diet is good idea at the start.

Dairy is a problem for many celiacs at first.  It's possible you may regain the ability to eat dairy without problems when you are fully healed.  Some do, some don't.  Six months is a reasonable time to expect substantial improvement I think.  But it varies a lot.  Some of us have additional food intolerances develop along the way, and it can take time to figure those out.

I hope you feel better soon!

 

Positron Newbie
Positron
Posted
On ‎12‎/‎17‎/‎2015 at 4:16 AM, Forman337 said:

I'm new to this site but have been using a lot lately trying to solve the mystery of my illness. I've been sick for over 4 years. I've had stomach problems my whole life but 4 years ago I woke up one morning sicker than I've ever been in my life and all these years since I have not fully better.

I was tested for everything the doctor could think of, I went for tests twice a week for two months. But I don't remember them ever testing me for Celiac Disease or gluten intolerance, or even mentioning it's existence. The doctor told me that the stomach problems were being caused by anxiety and he referred me to a psychiatrist.

I was put on Lamictal, Remeron, and Ativan and they helped with the anxiety, but not with the stomach problems.

Going back to the doctor they ran more tests which all came back negative, and they said I may have Irritable Bowel Syndrome. The symptoms I have are much more severe than any IBS sufferer I can think of.

I gave up on doctors and decided to try a gluten free diet to see what would happen.

It definitely changed the way I'd been feeling, but I can't tell if it's better or worse.

For 4 months after going gluten free I got worse. Much worse. So I did some research on gluten free food and realized half the stuff I'd been eating wasn't gluten free. I also have lactose intolerance, so that makes things more difficult food-wise. I also realized that I needed a separate toaster and microwave and cookware, etc. to prevent cross-contamination.

So I've been truly gluten free for only a month or two.

But then a few weeks ago I ate some candy I assumed was gluten free but was not. I lost 20 pounds in 4 days and I was so sick I couldn't do anything but sit and watch TV. So sick I couldn't sleep for two nights straight.

I've been better from that gluten poisoning for a couple weeks but every so often I get a wave of symptoms that lasts a couple of hours then goes away.

The other thing I noticed when I went gluten-free is that I don't get sick immediately after eating anymore (most of the time anyway). I can eat a meal and not feel horrible afterward. The downside is that since I've gone gluten free I've woken up in the morning and started dry heaving a few times. That never happened before I went gluten-free.

I also can't seem to get rid of a constant feeling of hunger that sometimes gets to the point of making me feel ill.

I don't know if all these symptoms are normal, but it can't all be caused by anxiety either. No doctor can find anything wrong with me in the past 4 years.

The gluten-free diet is my last hope of getting better. I'd love to hear suggestions, comments, shared experiences. Wondering if anyone with Celiac has experienced these problems.

Any advice is much appreciated! Thanks!

Doctors do not test for celiac, because they have no treatment for it.  I am gluten and lactose free a well, celiac caused lactose intolerance, I only figured out the celiac part after the lactose part was caused by the celiac. 

squirmingitch Veteran
squirmingitch
Posted

Forman337, 

It certainly sounds like you have a problem with gluten. What GFinDC said is true. 

When we go gluten-free it can be a rocky road for a while. For 3, 6 months, even a year. Kind of like a roller coaster with good days & bad days & everything in between until your gut starts healing. We also can go through something called gluten withdrawal where you get really wonky. Often part of that is hunger like you wouldn't believe - like 24/7 starving hunger.

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