I Feel Absolutely Miserable

[Hakman]

I was diagnosed with Celiac Disease almost 4 months ago (2/21/05). I have been mostly gluten-free since (I've slipped up a couple times, still in the learning process), but I still feel absolutely miserable.

A bit of background. I started feeling very nauseated after eating back on 2/2/02. At first, I thought I had just come down with something, and it would go away, which it didn't. Saw my doctor, tried this and that, the nausea came and went in various intervals. I'd feel fine for a period of time, then feel terrible for another period of time (I went almost a full year of feeling just fine at one point). A multitude of tests later, I was diagnosed with Celiac on 2/21 of this year. The whole time from 2/2/02, when I started feeling this way, up until I was diagnosed, I ate nothing but gluten foods; for just over 3 years.

It's been 4 months since I was diagnosed, and I still feel miserable; overwhelmingly nauseated, gagging, vomiting, etc. I'm sure that this is probably due to my eating nothing but gluten foods for the 3 year period from when the symptoms first started, and the time I was diagnosed. I had both a positive biopsy, and positive bloodwork. The numbers on my bloodwork weren't even close. The bloodwork that I had done was the IgG/IgA. I don't remember which was which, but the "normal" range for both is 0-19 (within that range, you do not have Celiac), my numbers were 67 and 126.

My doctor just recently put me on a prescription of both compazine and bentyl to see if that would help with the nausea. It's only been a week, and I've noticed some improvements so far, but not as much as I'd like. I was wondering if anyone knew of any ways to help "ease the pain"?

[KaitiUSA]

It took me about 6 months to feel alot better and a few more to get back to normal. It just takes time to heal and everybody's symptoms will go away in their own time...they just vary.

Make sure you aren't getting any gluten through products like shampoo and things like that. Those things get into your mouth pretty easily. Also soaps should be gluten free because when you wash your hands before you prepare your food then you touch the food, if the soap was not gluten free then your food could now be contaminated. There are many things to think of.

It sounds like gluten is definitely getting into your system somehow if your numbers are still high...I would check products you use as well as things you are eating and ways of possible contamination.

How many accidental ingestions of gluten do you have? If they are frequent then that would cause #'s to still be high and symptoms to definitely be there.

Also, do you have a safe and forbidden foods list? There are certain brands that do not hide anything,such as Kraft, that will list wheat,rye,barley,oats on the label if they contain any. There is about 20-30 companies that will do that..I can send them to you if you would like or there is info on this site about them.

Nausea is one of my biggest symptoms when I am glutened and I have this homeopathic spray that helps and also there is cola syrup that helps with nausea that is gluten free that I use. I also drink a lot of teas by celestial seasonings(they will write gluten free right on the box(usually on the bottom) They are good for calming the stomach

There are certain things you can do to calm symptoms but nothing will completely get rid of these symptoms.

Feel free to contact me if you need any help Welcome to the board

[Carriefaith]

I am sorry you feel so sick

I understand your situation. I had a ton of symptoms (too many to list) when I was diagnosed. Within 6 months after the diet about half of them were gone, but it took almost 1 year for the rest of my symptoms to clear up. Now, almost 1 year 4 months into the diet I am feeling a lot better than I did last year at this time, not 100% but quite close

Some suggestions:

Like Kaiti said check eveything that goes near or in your mouth for gluten. Like sunscreen, conditioner, medication, vitamins, toothpaste, even check things that are gluten-free for cross contamination. I was eating gluten-free Humpty Dumpty chips but I did not now they were produced on the same line as the gluten chips. I realized this about 10 months into the gluten-free diet and after I stopped eating them, I noticed that I started getting better. It's little things like contaminated chips for instance that can keep us sick.

Also, make sure you have a separate toaster, deep fryer, peanut butter, jam, butter, mayonnaise. These things can cross contaminated your food if you do not have your own.

Hope you are feeling better soon

[tarnalberry]

Have you determined if you have other food intolerances, like dairy or soy?

Have you investigated if you're hypoglycemic?

Have you investigated non-food sources of this - both physical and environmental?

[Hakman]

Thank you all for your responses and support.

Kaiti

I didn't think about it before, but I just checked my shampoo, and sure enough, hydrolized wheat protein and hydrolized wheat starch. Gone now.

The numbers on my bloodwork that I posted are what they were when I was diagnosed. I have been seriously considering having the bloodwork done again to see where I'm at now. I've accidentally consumed gluten twice since I was diagnosed.

Could you please send me the list of companies? I would really appreciate it! Also, where did you get the spray and cola syrup? If either at least help relieve some of the nausea, I'd like to at least try it out, as nausea is my biggest symptom as well.

Carrie

I will definately take your suggestions and check everything out. Thank you!

Tiffany

I haven't been tested for any other intolerances, but I have had it suggested before. Now does seem to be a good time to add that to my to-do list.

[KaitiUSA]

Here are brands that will not hide any gluten under anything...they will clearly list wheat,rye,barley,oats if the food contains any:

Aunt Nelly’s

Balance

Baskin Robbins

Ben&Jerry

Betty Crocker

Blue Bunny

Breyers

Campbells

Cascadian Farms

Celestial Seasonings

Country Crock

Dove

Edy’s

General Mills

Good Humor

Green Giant

Haagen Daz

Hellman’s

Hershey

Hormel

Hungry Jack

Jiffy

Knorr

Kozy Snack

Kraft

Libby’s

Lipton

Martha White

McCormick

Nabisco

Nestle

Old El Paso

Ortega

Pillsbury

Popsicle

Post

Progresso

Russell Stover

Seneca Foods

Smucker

Stokely’s

Sunny Delight

T Marzetti

Tyson

Unilever

Wishbone

Yoplait

Zatarain’s

The Cola Syrup I get at a regular supermarket(I am not sure if it's available at all supermarkets...if you can't find it then I'm sure you could order from their site) and it's made by Apothecary Products Inc.

The spray I use is called Stomach Distress and it is by Liddell and I get that at the Vitamin Shoppe.

Nausea has always been the worst thing for me and those 2 things have really calmed it quite a bit. I hope they work for you.

As for shampoos, I am not sure which kinds guys like to use but Dove is a great brand because they will not hide anything on labels so they will say wheat,rye,barley,oats if there is any in it. I use alot of Dove products.

There is alot of information on products and soaps on here so I'm sure you'll be able to find something that will work.

[Carriefaith]

I haven't been tested for any other intolerances

A lot of celiacs are lactose intolerant. I developed a major intolerance to dairy once I got celiac.

[jknnej]

Oh boy can I relate to the nausea.

If you looked at all of the posts on this board you would see I've written several on this same topic.

My doctor said a lot of nausea is a more uncommon symptom of reflux and did an endoscopy and saw I had mild gastritis. Couldn't find anything else wrong.

He put me on Nexium and I actually feel like a human being again.

Don't get me wrong; it's not perfect and I still feel really crappy for at least a portion of the day, but I can make it through. So far, anyway.

I'm also going to look into hormonal issues to make sure it's not an imbalance, but that's cleary not your problem as I think I read your name was Adam:) LOL

Anyway, it couldn't hurt to try some Nexium..that is, if your dr. rules out other more serious reasons why you might be so nauseated (gall bladder, liver, kidneys, pancreas, diabetes, etc.) and prescribes it for you. It's really made an impact on my life lately.

Oh I must add: I am convinced the gluten free diet causes nausea in a significant portion of us. I have to say no matter how much diarrhea and stomach cramps and bloating I had before, I was almost NEVER nauseated. Then I went gluten-free and nausea became a normal thing for me....the tummy pain and diarrhea went away but has been replaced by this horrible nausea. I have been gluten-free for 6 months now and I sure hope this gets better.

[Carriefaith]

I've also noticed nausea after going gluten-free. Before I was gluten-free, I had a very "strong" stomach and hardley ever felt nauseated or gagged. After I went gluten-free, I found that I feel nauseated a lot more than I used to and I gag sometimes when I feel sick or "glutened"... and I'm not sure why. For me the nausea sometimes goes a way after I eat something.

[Jnkmnky]

I was just reading about the nausea you all are saying you're experiencing. My son was diagnosed at age three and I never hear anything from him about nausea. He's seven now. It makes me wonder if he experiences this but doesn't tell me or thinks it's normal. It's something I'll have to bring up with him. I can't think of what would make a person eating gluten-free so sick to their stomach. I did gluten-free for four months, actually, and never felt that way. Straaaange.

[Gwendolene]

Hi,

I've been dairy-free for about 4 months, which helped my symptoms tremendously, but I could still feel something was wrong with my body. I saw an DO 4 days ago, who suspects celiac and put me on a gluten-free diet to see how I respond.

After doing some research I am very convinced that I have celiac disease: symptoms being extreme bloating, gas, nausuea, fatigue, acid reflux, alternating diarrea/constipation, unexplained appendictius type pain, white flecks on finger nails and as mentioned earler lactose intolerance.

I have noticed that after going gluten-free I have been releasing a lot more gas than usual. I assume this is normal, since it has to go somewhere (I had the same experience for the first 2 weeks going dairy-free.)

What really concerns me is stomach soreness, nausea and periods of greatly increased energy followed by general fatigue. I know I haven't been gluten-free long enough to expect dramatic changes yet, but is this normal when starting the diet? Perhaps I am not eating enough of some nutrient or other. (Mainly living off rice & veggies @ the moment.)

Also, on average how long does it take to feel like your old (pre-celiac disease) self?

Thanks for all your help

Gwendolene

[tarnalberry]

If you're mainly living off rice and veggies - and hence not getting enough fat and protein - you may be experiencing blood sugar problems. You might try adding more protein and fat to your diet (in the form of meats, nuts, and higher protein/fat grains (like buckwheat, quinoa, rice bran), and other items like coconut milk and oils) to see if that makes any difference.