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Electra

Why Am I Still In So Much Pain?

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I was diagnosed a while ago and seemed to do pretty good for a while. About every other week It seemed as though I had been cross contaminated and I had a little pain in my upper abdomin under my rib cage for a couple of days. Well I cut everything out except for fresh fruits, veggies, and meats and now I'm in almost CONSTANT pain. Under my ribs on both sides I get a constant aching pain, and when I drive in the car or sit/stand in one position for too long I get these stabbing pains in the same spot. The pain radiates around to my back but it stays on the sides and never goes in the middle. I'm petrified to eat now because I hurt so badly all the time. Everything I'm eating should be 100% safe, so why am I having so much pain all of the sudden? It seems to get worse with every passing day and I just can't handle much more of this. Is there something else that could be causing this pain? It's the same kind of pain I had before I found out I had celiac, so what in the world do you think may be going on?


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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I have been gluten free for 3 months and I have experienced the same thing! However, I recently had an appt with an herbalist and discovered food sensitivities that I think are the culprit. A few of the things I cannot have are soy, dairy, any berries with little seeds (strawberries, raspberries etc...she said it's difficult for my irritated gut to digest them), nuts and some random fruits and veggies that are difficult to digest or that are very sugery. Also she said that my liver is quite congested (which I had guessed) so it was part of the painful problem. I have experienced some relief so far on my new diet. Once my GI tract shows signs of improvement she is suggesting that I do a cleanse. We are quite hopeful that this will start some healing and long term help I will keep you posted on my progess, and hope you find some relief from your pain soon!

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I was diagnosed a while ago and seemed to do pretty good for a while. About every other week It seemed as though I had been cross contaminated and I had a little pain in my upper abdomin under my rib cage for a couple of days. Well I cut everything out except for fresh fruits, veggies, and meats and now I'm in almost CONSTANT pain. Under my ribs on both sides I get a constant aching pain, and when I drive in the car or sit/stand in one position for too long I get these stabbing pains in the same spot. The pain radiates around to my back but it stays on the sides and never goes in the middle. I'm petrified to eat now because I hurt so badly all the time. Everything I'm eating should be 100% safe, so why am I having so much pain all of the sudden? It seems to get worse with every passing day and I just can't handle much more of this. Is there something else that could be causing this pain? It's the same kind of pain I had before I found out I had celiac, so what in the world do you think may be going on?

Have you checked everything you come into contact with for gluten ingredients? Are you taking any meds or supplements that you have not checked yourself, call the companies yourself do not rely on anyone else. Be sure to read the entire label on supplements, some will add wheat or barley grass and still call the item gluten-free. For the pain have your tried taking a dose of pepto bismal, I swear by the stuff and usually one dose will relieve my pain. I get the same sort of discomfort you are referring to from CC, if you can reevaluate everything, not much fun I know but I have a feeling gluten is sneaking in there somewhere on you. If you have firmly established that CC could not be an issue then if it continues you should contact your doctor.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Once my GI tract shows signs of improvement she is suggesting that I do a cleanse.

Please, please, please use great caution with a 'cleanse'. These are not something that we normally benefit from and can be extremely dangerous for those of us with celiac. There are some of us who have been made extremely ill by these and they really have no benefit other than money for the companies that make them. Your body has ways of cleansing itself and you risk upsetting the natural flora and fauna of your digestive tract among other things.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Electra, since cutting out everything else from your diet is there something in particular that you have started eating more of to compensate? Maybe you have started to eat more of something, a fruit or vegetable for example, that you happen not to digest very well, or are intolerant to.

Does the pain feel like it has to do with your digestive system? After all, at some point you might have to consider that it could be unrelated, and see a doctor...

Pauliina

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Thanks everyone for your replies. I have started eating some new product and I've cut those out since I first posted this and so far I seem to be getting better. One of them was Honey Ham and I think whatever they use to flavor it may have some CC in there somewhere. According to the label it's safe, and I've eaten it before with no issues, but I'm just not convinced it's safe at this point. The other thing I added was string cheese which should be safe, but I cut it out just in case. The only other thing could be my medicine, but I've continued taking that even though I cut out the meat and cheese and I'm still feeling quite a bit better. It's also time to take my B-12 shot again but I haven't been able to get in and get my perscription filled, so I'm wondering if I may feel pain towards the end of the month when that B-12 shot wares off (not that it lasts me that long lol).

The seeds issue is interesting because I have been eating a lot more watermelon (seedless, but it has the white seeds) and Kiwi and I was just thinking that it might be the Kiwi because I hadn't had that in a few days either, and when I usually eat it my stools end up soft again HMMMMMMMMMMM interesting thought. I'll have to keep that one in mind and cut out Kiwi next if the meat and cheese doesn't work.

Thanks again for all the advise and hopefully we all feel great soon!!


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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String cheese, any cheese, gives me terrible back aches and stomach pain. I thought I had a kidney stone once the pain was so sharp.

Hope you feel better now.

I doubt if it's lack of B-12. I use to blame all sorts of symptoms on lack of B-12, but now I realize it was gluten. Now I forget to take my B-12 shot, cause I have no symptoms and have lots of energy


Rheumatic fever at age 5 and again at age 6. Antibiotics for 6 years to prevent strep throat.

Anemia, Mono, Hepititis, Pernicious Anemia, Enlarged Heart, Osteopenia, Vitamin D deficiency, Ataxia, Digestive issues, reactive hypoglycemia, and on and on and on!

Following the SCD diet after gluten free didn't solve symptoms. Much better and getting back my life!

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I was diagnosed a while ago and seemed to do pretty good for a while. About every other week It seemed as though I had been cross contaminated and I had a little pain in my upper abdomin under my rib cage for a couple of days. Well I cut everything out except for fresh fruits, veggies, and meats and now I'm in almost CONSTANT pain. Under my ribs on both sides I get a constant aching pain, and when I drive in the car or sit/stand in one position for too long I get these stabbing pains in the same spot. The pain radiates around to my back but it stays on the sides and never goes in the middle. I'm petrified to eat now because I hurt so badly all the time. Everything I'm eating should be 100% safe, so why am I having so much pain all of the sudden? It seems to get worse with every passing day and I just can't handle much more of this. Is there something else that could be causing this pain? It's the same kind of pain I had before I found out I had celiac, so what in the world do you think may be going on?

WOW, I CAN'T BELIEVE THAT YOU ARE FEELING THE SAME EXACT WAY THAT I DO. I HAVE BEEN GLUTEN FREE SINCE 2-07, AND AS I WRITE I STILL HAVE THE STOMACH AND RIB PAIN. I DO EAT ALOT OF NUTS, AND I WONDER IF MY STOMACH JUST CAN'T TOLERATE IT YET. PLEASE LET ME KNOW IF YOU HAVE TRIED ANYTHING NEW THAT MAYBE HAVE HELPED YOU. :)

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I dont know if you have had a colonoscopy, but maybe you have diverticulosis and the nuts and seeds in fruit are bothering you.


"The only thing constant in life is change"

Celiac not confirmed, but positive results with diet change

Gluten free since 10/06

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I dont know if you have had a colonoscopy, but maybe you have diverticulosis and the nuts and seeds in fruit are bothering you.


"The only thing constant in life is change"

Celiac not confirmed, but positive results with diet change

Gluten free since 10/06

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Please, please, please use great caution with a 'cleanse'. These are not something that we normally benefit from and can be extremely dangerous for those of us with celiac. There are some of us who have been made extremely ill by these and they really have no benefit other than money for the companies that make them. Your body has ways of cleansing itself and you risk upsetting the natural flora and fauna of your digestive tract among other things.

I agree with ravenwoodglass!! Be very careful with this cleanse. I am wondering if pro-bitotics would benefit you much, much more. I take those, with the fos powder ( that feeds the good bacteria!) . My side pains have gone away....PLEASE be extra careful!!


Feb 9, 07 - Positive gene test D2 -Celiac Disease and Positive D3 for Gluten Sensitivity-Double Whammy!

Positive blood test for antibodies for celiac

SEVERE Gluten Ataxia - trouble speaking - could not even turn my head side to side - almost bedridden

March 07 - 2 different doctors have documented my records as confirmed Celiac

Oct 07 - found a secret to feeling better - no processed foods - The healing comes from eating raw vegetables, and fruits!

Husband - tested = celiac gene+diabetes gene

3 children-

youngest - doc wont test has w/ Hashimoto Disease

middle- tested = celiac gene+lymphoma gene - dx-celiac

oldest - ignores warnings

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WOW, I CAN'T BELIEVE THAT YOU ARE FEELING THE SAME EXACT WAY THAT I DO. I HAVE BEEN GLUTEN FREE SINCE 2-07, AND AS I WRITE I STILL HAVE THE STOMACH AND RIB PAIN. I DO EAT ALOT OF NUTS, AND I WONDER IF MY STOMACH JUST CAN'T TOLERATE IT YET. PLEASE LET ME KNOW IF YOU HAVE TRIED ANYTHING NEW THAT MAYBE HAVE HELPED YOU. :)

I Have that pain as well and massive swelling all the time in that rib under the rib area..., day in day out and I've been off gluten for 2yrs. Celiac sucks!!

Sincerely Celiac Sue

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I dont know if you have had a colonoscopy, but maybe you have diverticulosis and the nuts and seeds in fruit are bothering you.

PEGGY, DID YOU EVER NOTICE IF YOU GOT GLUTENED BY ACCIDENT, EACH TIME IT GETS WORSE?

THIS SUNDAY I HAD GLUTEN FREE PANCAKES(THEY WERE YUMMY) WITH SYRUP. THE SYRUP INGREDIENTS LOOKED HARMLESS. LATER THAT DAY, I STARTED TO FEEL THAT WAVE OF NAUSEA, AND THE NEXT DAY I WAS SO SICK. I CALLED THE FOOD COMPANY, AND SURE ENOUGH IT HAD GLUTEN IN IT. I THINK THESE COMPANIES SHOULD PLAINLY WRITE:CONTAINS GLUTEN!! BUT I JUST WANTED TO KNOW WHY IT GETS WORSE EVERY TIME YOU EAT GLUTEN.

THANKS, JANET

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