Hi all,
I am a new poster here but not too new to the whole celiac disease thing. My son has been gluten-free since 11/03. Since the birth of my second daughter I have been forced to go gluten free. I feel that I have celiac disease as I feel great when I am gluten-free. No ab pain, no headaches, more patient, and no hypoglycemia which I have struggled with since a child. Also interesting to note my mother said that I started to tantrum at 10 months when she introduced barley cereal. I would also wake up with poop from knees to armpits.

Currently I am experiencing SEVERE abdominal pain. The pain is slightly under my rib cage on the right side about 2 fingers below my sternum. It is worse when I stand up eat or drink. I went to the ER last wed. They did a CT and found a Rt kidney stone 2 mm, cysts of 1 cm on both kidneys, and a cyst on my rt ovary. They sent me away with pain meds. That was wed 3/8/06.

I went to a quack oops mean doctor that was filling in for my reg dr. this monday. He said that it is probably irratible bowels. He didn't know a thing about celiac disease and had to look up the symptoms in his palm pilot He did refer me to a GI who can't see me until 4/11.

Today the pain is worse than ever I can't even drink water or juice without it hurting. I haven't eaten since monday night. At this rate there won't be anythin for the GI to see.

I have only had this one other time in my life and that was last November. 4 days before the pain I took a bite of a gluten cookie. Then thought no, it's not worth it and trashed the rest. The pain lasted a week and then went away. They did subject me to a colonoscopy with no results. This time I know that I was glutened 3 times within 10 days. Then the pain started 7 days after the last cc.

My questions are:
1. How long can the effects of being "glutened" last
2. Does this sound like anything anyone else has experienced.
3. Can you have worse symptoms than ever after you have been gluten-free and then get glutened?
4. What could be done for this?
5. Can kidney stones that small cause this kind of pain?

My husband thinks I should go to the er but I hate it there I feel like I get the run around and this would be the third time for the same pain. If they didn't catch it on the first or second time what would be different on the third?


Thanks in advance for your help.

Chantelle

I don't know about kidney pain. It seems you have been to the doctor and they aren't finding anything. If I get glutened, I am sick for days. The last time I was sick for an extened amount of time it was from corn/soy and it took me a good 4 weeks to feel a little better. After being gluten-free for sometime, each time you are glutened feels worse. I doubt I have helped you out--sorry I couldn't tell you more. Deb

Chantelle:

I think that your symtoms sound very severe to me and perhaps it is something else. I don't know of getting gluttened would last a period of three weeks with that severity of pain.

Do your have a primary doctor without going the the emergency room, or someone with a history of your medical record? Maybe an ultra-sound would show something. Kidney stones or gall stones may be the culprit, but I highly recommend that you see a doctor. If you have a blockage somewhere, it could be very serious.

Please see medical help, and I hope you will feel better soon. - Lisa

are you sure your meds are gluten-free? are you sure that you have all the gluten out of your personal care products? shampoos, lotions, toothpaste, makeup (yes it is that important)

I recently had an ongoing mystery glutening that I couldn't figure out, it was a cheap generic coffee that used flour on their conveyor belts to keep stuff from sticking... go figure. I was sick for a good month with that one.

It could just be the kidney stones, it could be an ongoing mystery glutening as hidden glutens can be EVERYWHERE

Hi Chantelle,
Usually abdominal pain from glutening feels better over time, not worse. Did they check your appendix when you were at the ER? That's on the right side. It would show up on the CT scan. If your pain is really severe, I'd go back and see my doctor asap.

Yes they did check my appendix. This pain is much higher. It feels like it is my duodenum ( start of small intestine.) I also know that there are several other things there as well.

I have made a follow-up with my regular dr. for tomorrow afternoon. For now I will get by on pain killers. I am greatful for the responses. I am not always sure what to chalk up to celiac disease and what not.

Chantelle

Maybe you have an ulcer? Just an idea.
Monica

Maybe you have additional sensitivities....casein (dairy), soy, starches? Eliminating gluten seemed to make my other sensitivities come to the forefront. And in the testing for celiac that I did, I found out I was also casein sensitive and can't eat that either. So I'd suggest looking into other things that you eat regularly and consider them possible suspects.

Have you tried an elimination diet to see if "Food" is even the culprit? Also, I'm not sure if you meant colonoscopy or not, but from all I have read they cannot detect celiac disease that way.

Have you considered having the blood test and biopsy done to confirm celiac disease, at least that way you could rule it in or out? If your children are confirmed celiac disease, then it would be logical for you to be tested as well.

Your pain could very well be coming from the kidney stone. Even small ones can be excrutiating. If you are still in a great deal of pain either call your doctor or go to the ER and let them know about the stone that was found. There are ways of dealing with the stones that are not surgical. A urologist would be helpful also. I hope you get relief soon.

The pain sure can be worse after you've been gluten free for a while! You are poisoining your system and your system in attacking itself to get rid of the poison. Before I was diagnosed, all my pain was in my small intestine, right where you feel your pain! Each time I've had any gluten since being diagnosed, and I don't cheat, it was unknowning, I was in bed for a week! I couldn't even straighten up it hurt so much!! Until all traces are out of your system, the symptoms will last, sorry. I've heard also that kidney stones hurt more than childbirth and I've done that three times, so no thanks to any kidney stones! If the pain isn't better in 8-9 days, go back to the ER.
Brenp

Chantelle,
How are you feeling? Did you discover anything at the follow up appointment?

Thank you for asking and thanks to everyone who responded. I saw my real dr last thursday. She ordered more tests. They did a HIDA scan where the look at the function of the gall bladder. I am supposed to get the results today. I honestly hope it shows something because the pain has not gone away. I did find a licorice herb tea that is a smoothe muscle relaxer. So that has helped to where I can at least eat a small breakfast and dinner but I still have pain after eating.

I hope they find out what the problem is soon. On the good note. I have gotten back into my pre-pregnancy pants and they fit better than when I bought them. I also have had time to work on a coloring project I've been neglecting as well as watch all four of the Harry Potter movies with my husband after the kids go to bed. Every cloud has a silver lining right?

Thanks so much for carring.

Chantelle