Symptoms

[newg]

I had a negative blood test but my endoscopy was positive (my small intestine was has damage) so my doctor told me I have Celiac Disease. The ONLY symptom I have is feeling nauseous and since I have stopped eating gluten and wheat I have been feeling better but I still feel nauseous about half the time. Is this normal....how long does it usually take to feel better? Has anyone else had this symptom? Thanks

[Lisa]

Welcome:

You damage to you intestines too quite some time, healing will likwise.

Make sure that you are eating lightly seasoned food and check your lotions, shampoo, (lipstick?) and toothpaste.

[happygirl]

Newg,

Welcome to the board! We are happy you have found us, amidst your diagnosis.

Yes, it is normal. How long have you been on the gluten free diet? It takes awhile to heal. For some, they see improvements but it takes months to get back to normal. Others heal and get better pretty quickly. Others see no improvements and then months later, get better.

Celiac is often referred to as a medical chameleon because there are so many symptoms, so many variances on healing times, etc. One person can have diarrhea, another constipation. One can have weight loss, another weight gain. Some have absolutely every symptom in the book, others only have the "classic" GI symptoms, others have relatively no symptoms (referred to as "asymptomatic Celiac" or "silent Celiac.")

So...the standard answer is....as much as anything is normal with this disease, yes it is normal.

Plus, the learning curve is steep with gluten free eating, so you might still be getting gluten through ingredients or cross contamination.

Let us know what we can do to help. Please feel free to PM me anytime!

Laura

[NoGluGirl]

I had a negative blood test but my endoscopy was positive (my small intestine was has damage) so my doctor told me I have Celiac Disease. The ONLY symptom I have is feeling nauseous and since I have stopped eating gluten and wheat I have been feeling better but I still feel nauseous about half the time. Is this normal....how long does it usually take to feel better? Has anyone else had this symptom? Thanks

Dear newg,

I am gluten intolerant and nausea has been my primary symptom. It is so hard to deal with. Since you have damage, chances are, the nausea you are still experiencing is due to your small intestine not being healed yet. It can take months or even years for it to completely heal if the damage is really bad.

On top of the nausea, I had such bad reflux I had to sleep practically sitting straight up. I also had poking pains all over my stomach, and the runs. My stomach also got so bloated and hurt, and I could not lose weight no matter what I did! About once a week, usually after I ate waffles, a peice of bread, or a poptart, or noodles, I would get so bloated and queasy, and would break out in a sweat, get extremely nauseated, start shaking and have diarrhea. Sometimes I got the dry heaves as well, on top of having so much gas I felt like I was having a heart-attack. I would shake really bad and my hands would go numb. Promethazine is the only thing that helped. Since going gluten-free, the reflux has reduced quite a bit, and I was taking Prilosec twice a day and it was unbearable even with it before the diet. Now I can even skip a dose and if I am late with it, it does not nearly kill me. This is a miracle in itself! The nausea has reduced to the point I can actually leave the house without taking my medication first! I have had more trouble with it returning since I did a course of antibiotics, but I have yeast candida as well. My tongue was going numb and my lips were swelling up too, before going gluten-free. It took only a few days before I saw results. I have to say it took a couple of weeks before I really noticed a difference. It was worth the wait. I hope to improve further soon. I hope this helped.

Sincerely,

NoGluGirl

P.S. I had a negative biopsy and bloodwork, but obviously it was not very accurate.

[Ursa Major]

I had a negative blood test but my endoscopy was positive (my small intestine was has damage) so my doctor told me I have Celiac Disease. The ONLY symptom I have is feeling nauseous and since I have stopped eating gluten and wheat I have been feeling better but I still feel nauseous about half the time. Is this normal....how long does it usually take to feel better? Has anyone else had this symptom? Thanks

Have you eliminated dairy as well? People with celiac disease can generally not tolerate dairy until the villi heal, and many can't tolerate casein (meaning all dairy, because casein is the protein in milk) and won't ever be able to have milk.

So, eliminating gluten might be eliminating half the problem, and you might start feeling even much better if you get rid of dairy.

Another culprit could be soy. Dairy and soy are also known to cause villi damage and could be a problem on top of the gluten, or even instead of it.

So, eliminate those and see how you are doing. Then, after about a month, test them one at a time, to see if you react. If you do, you know to keep them out of your diet.

It can be tricky. You also may still have gluten somewhere sneaking in. Have you gone through all of your personal care products? You need to replace everything with gluten (wheat germ oil, barley extract, oat bran), and that goes for shampoo, conditioner, lipstick/chapstick, soap, toothpaste, lotions etc.

Also, if you're eating gluten-free bread, have you bought yourself a new toaster? It simply isn't possible to clean your toaster well enough to be safe. The same goes for plastic colanders, wooden cutting boards and wooden cooking spoons, and scratched non-stick cookware.

[newg]

Dear newg,

I am gluten intolerant and nausea has been my primary symptom. It is so hard to deal with. Since you have damage, chances are, the nausea you are still experiencing is due to your small intestine not being healed yet. It can take months or even years for it to completely heal if the damage is really bad.

On top of the nausea, I had such bad reflux I had to sleep practically sitting straight up. I also had poking pains all over my stomach, and the runs. My stomach also got so bloated and hurt, and I could not lose weight no matter what I did! About once a week, usually after I ate waffles, a peice of bread, or a poptart, or noodles, I would get so bloated and queasy, and would break out in a sweat, get extremely nauseated, start shaking and have diarrhea. Sometimes I got the dry heaves as well, on top of having so much gas I felt like I was having a heart-attack. I would shake really bad and my hands would go numb. Promethazine is the only thing that helped. Since going gluten-free, the reflux has reduced quite a bit, and I was taking Prilosec twice a day and it was unbearable even with it before the diet. Now I can even skip a dose and if I am late with it, it does not nearly kill me. This is a miracle in itself! The nausea has reduced to the point I can actually leave the house without taking my medication first! I have had more trouble with it returning since I did a course of antibiotics, but I have yeast candida as well. My tongue was going numb and my lips were swelling up too, before going gluten-free. It took only a few days before I saw results. I have to say it took a couple of weeks before I really noticed a difference. It was worth the wait. I hope to improve further soon. I hope this helped.

Sincerely,

NoGluGirl

P.S. I had a negative biopsy and bloodwork, but obviously it was not very accurate.

I take promethazine too! I try not to take it unless I have to because it makes me so tired!!! I am gluten-free (i think) and now I only get nauseaus about every other day. I'm hoping in a couple of weeks I won't have to take it anymore. Do you still take it? Thanks for the response...its nice to know someone else has the same symptoms as me!

newg

[Mary Contrary]

I had nausea for a bit as well, it really scared me at first when I was getting sick to my stomach usually in the middle of the night, I'd even have to get up and throw up...that coupled with the explosive D I thought I was in the throws of something horrible and life threatening...

I have had negative blood work and now going for a biopsy this coming week, but I have been off of gluten for 2 months now, I figured it out myself, my regular Doc was no help at all..and my symptoms are starting to subside...especially the horrible bloating and gas, it was gone in a matter of a week or so..the D is just now starting to go away. It doesn't even matter to me what they find or don't find next week, I am sure not ever going back to gluten. Also having a colonoscopy to be on the safe side..I am of that age anyway when a person needs one.

My regular Doc told me to eat toast...