[Ingrown]

Hello. I'm curious to see if anyone has or has had my symptoms.

The symptoms I've had for the last 3 years are extreme fatigue after eating and after bowl movements along with dizzyness, headaces and heavy breathing, like my body is exahusted and working hard to digest food. The fatigue is the worst after I wake up and each episode can last 2+ hours, sometimes it can last for most of the day. 4-5 hours before I go to bed is usually when I feel symptom free and then I feel good untill I wake up the next day. I'm pretty much usless for about 4 hours after I get up because I have absolutly no energy. I also usually have to take a nap after I have a bowl movement because I'm so exhausted. (I don't have cramps or constipation or any other bowl issues)

It took me about a year to notice the patterns and conclude that my illness was digestive related, thats when I made a visit to the gastrointestinal doctor and had the test's done.

I believe I've been gluten free for about 4 months now and I understand that it can take up to 2 years for my small intestine to fully heal. It seems like most people with this disease have different symptoms than me. Does anyone else feel like me or is there somthing else wrong with me beside the celiac? Any suggestions to increase my energy? I usually workout on my eliptical for 1/2 hour every day and I don't smoke, drink alcohol and I'm not over weight. Thanks.

[sadeew]

It sounds like you may have something called "pancreatic insufficiency". Pancfreatic enzymes are the treatment but I don't know anything about the dose, etc.

Pancreatic insufficieny is commonly found in Celiacs. It would explain the fatugue after eating.

The rest of your symptoms...I don't know. Have you had your ferretin (blood iron) checked? I know Celiacs can affect the liver, too. It may just take time.

You may also want to look into something called bacterial overgrowth.

Good luck to you.

[Ingrown]

Thanks I will look into the pancreatic insufficiency and mabye I'll get some tests done to see how healthy my pancreas is. I'm a former alcoholic so this could be a possibility.

I feel a little better since I began the gluten free diet but not much. It did cured my insomnia though. I used to wake up every night after only sleeping for about 4 hours and I wouldn't be able to go back to bed until about 3-4 hours later.

I've been gluten free for 4 months now and I was really hoping to feel better. I've already spent around $4,000 on medical expenses and my insurance sucks. First the doctors thought it was Hyperthyroidism until I had my thyroid exrayed. Tests have confirmed that my liver and blood suger are normal.

I'll try probiotic enzymes to see if that will help. Does anyone else have any ideas? thanks.

[Phantom]

I have had the same symptoms for the past couple of years and have developed a serious reaction to amoxicillin, So serious it got me an open heart surgery (get a second opinion!!!!) When I eat it makes me so tired I can barely keep my eyes open, I have fallen asleep during a mouse click at work. I have been suspecting that I was having a reaction to MSG....Now I am suspecting Gluten. Thanks for sharing I have been very worried that it was something serious. Not that this isn't serious, but its something I can deal with! My Trust in the medical profession is hovering around 0% so anything I can do myself is a good thing.

[eatmeat4good]

I had all of your symptoms too. My disease process included the heart palpitations and the falling asleep and extreme fatigue. I was diagnosed with fibromyalgia. Fast forward 7 years and I found Celiac disease here. That is what I had. Even had the DH rash. But just wanted you to know that your symptoms are consistent with Celiac and if it is Celiac, the malnutrition and vitamin deficiency can make you feel extremely lousy and can take a long time to heal. I am in my second year gluten free. All of my symptoms have disappeared. The rash easily re-activates with gluten, but I think you should pursue the gluten free diet and see if it helps your symptoms.

I wish I had gone Paleo right away, but I messed around with gluten free baked goods, and rice, potato's and corn for a long time. Then I took the plunge to go full Paleo and my healing really took off. I cannot believe my muscles are back and I feel good again. I really thought I'd stay that way forever. The weakness was horrifying.

If you are interested in Paleo, check out Mark's Daily Apple.com.
It's hard to do but man it is so worth it.
I even make my own beef tallow now!

You may find that trace gluten and cross constamination bring all and I mean ALL of your symptoms back. That is what happens to me. But at least it is short-lived and I know that I can recover. Then I am ever more vigilant about gluten.

Basically the only packaged stuff I eat is A1 steak sauce, Horsradish, (gotta have something to help me get all that meat down!)...and Dove Chocolate. I know, I know...not technically Paleo unless you believe Cacao is a vegetable...I do.

My sister was in really bad shape before she went gluten free. Dr.'s couldn't figure her problem out either. She went gluten free and it all disappeared. We couldn't eat gluten again to be able to test. But now the children in the family are coming up positive for Celiac in the testing.

Don't be surprised if you have nausea in the beginning. I did...but it got way better as I healed. I used to push myself to exercise when they said it was fibromyalgia and I was so damned sick. Anyway, since I increased my protein so much, my muscle mass has increased like crazy...and I do very minimal exercise. But mentally and in physical stamina...I am world's better than when I didn't know what was wrong with me.

good luck and I think you are right to suspect gluten may be the problem.

Yeah, and my own rule in my head now is..."Meat makes muscle...so let thy food be thy medicine." Energy way up there too.
Good luck.

[TTNOGluten]

I have been gluten free for about 5 months now, and you describe nearly some of the exact symptoms I have, in addition to the extreme fatigue and malaise after eating(and with me it is eating anything, even an apple), I have a constant deep abdominal ache and constant cramp like sensation in my ribs, it just never ever goes away. I am sure the pain is just starting to flat out wear on me. Prior to August I never had any of this, energy level was good, now I barely make it through the day. I have had all kinds of labs, all of which show no other abnormality, I hate deeling with this deep nauseous ache in the ribs, back and belly more than anything, but the malaise and fatigue can be quite diabling as well.
I just keep praying it will get better, heading back for another scope next week with Gastro, he is not sure why I feel this way, he is starting to think I have refractory disease as I have not noticed even 1% improvement while on a strict diet.
I hope you get to the bottom of your situation, I am quickly losing faith that I will ever get feeling better. To be honest I cannot imagine living like this forever, it just flat out sucks

[Celtic Queen]

When I'm glutened, I get extreme fatigue 2-3 hours after eating. I literally cannot keep my eyes open.

Have you had a blood panel run lately to check your vitamin levels? Anemia and Vitamin D deficiencies can contribute to fatigue.

[bwcalder1977]

I feel for all of you. I have similar symptoms in terms of feeling tired after I eat. I also feel sick to my stomach and nauseated after I eat as well. This disease sucks. I have been gluten free for about 4 months and I still dont feel better. I know it can take a while, but i hope it kicks in soon. I havent heard about the Paleo diet, I will have to check that out.

[thleensd]

What kinds of foods are you eating? Just because it is gluten-free doesn't mean it's best for you.

I didn't turn the corner to feeling better until I started eating only unprocessed foods, then went grain-free/paleo. Now I'm on the GAPS diet which is quite similar to paleo.

As you'll see reading this forum, there are many people with secondary intolerances as well. Maybe start a food journal to track how you're feeling when you eat certain foods (although this is tough, because there are delayed reactions).

Good luck!

[ElizFost]

I experience fatigue after eating certain foods that are gluten free. I found out I am fructose malabsorption. They are discovering a growing number of people with celiac and lactose intolerance have fructose malabsorption so I have to avoid the foods on that list.