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Just Found Out About This After 10 Years Of Pain

Guest ohiodad

By Guest ohiodad
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

Recommended Posts

mftnchn Explorer
mftnchn
Posted

Please keep us posted, and know that what you are feeling is something we have all been through. It does get better, and this forum is a lifeline and the best source of support and information I have found.

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Guest ohiodad
Guest ohiodad
Posted
Please keep us posted, and know that what you are feeling is something we have all been through. It does get better, and this forum is a lifeline and the best source of support and information I have found.

Had my blood test done yesterday and cat scan because of some other complications. It turns out that I also have a bad case of Diverticulitos and they are admitted me to the hospital today. They gave me some antibiotics in hope that it would help with the massive pain and infection, but it has done nothing so they are admitting me. Hopefully it wont come to surgery, but at this point I wouldn't be suprised. I should know the results of the Celiac blood panel on Wed or Thur of next week. The Doctor said that all my symptoms lead to Celiac but we will see. Lets hope for the best.

buffettbride Enthusiast
buffettbride
Posted

It really isn't nearly as bad as it seems at first. It is very overwhelming to start, but we've been happily surprised at the things my daughter can eat. We keep our house gluten-free, mostly because we also have a young son who would be glutening everything if we didn't keep it that way (although he is starting to understand his sissy can't eat everything).

We didn't replace our pots and pans but I did wash them like mad after she was DX and we replaced all our kitchen utensils. I promise it is not ridiculous to do so. My pans were practically brand new (at Christmas) with no scratches so I felt OK keeping them.

The gluten-free substitute foods are expensive but not always necessary. You'll probably find a few that you like as staples but most of the time we just eat rice and potatoes rather than bread and such. Once you realize how healthy you feel without eating gluten, it won't feel like such a hassle or trouble.

I totally understand the thoughts of wanting a simpler, easier answer. We thought when DD was diagnosed she simply had reflux or ulcers or H.pylori. We were very surprised when the dx came back as Celiac. What might help is thinking of this in terms of if one of your children was going through what you are going through now, wouldn't you take every precaution and every effort you could to keep your child healthy? I'd bet money that you would. Now, just transfer those feelings to yourself and realize that you are worth just the same amount of diligence and care.

nora-n Rookie
nora-n
Posted

ohiodad, I hope you will get better from the diverticulitis. They give you IV antibiotics, don't they?

nora

nora-n Rookie
nora-n
Posted

LoriC, DH IS celiac. No need for further testing DH is celiac.

Here the government gives us about 300$ a month if one is diagnosed celiac by biopsy (blood test does not count) or diagnosed DH ......

nora

Guest ohiodad
Guest ohiodad
Posted

Yes Nora they gave me an IV for antibiotics. They still have not let me know the results of the Celiac test.

The pain has returned from the Diverticulitus so I am probably going back to the hospital. The Surgen wants to do surgery and cut out about 7cm of intestens. The Antibiotics have not worked and the pain is returning. I am young to have these curcumstances already, but as in all of my life I guess all things come before their time.

I have alrweady switched to a none Gluten Diet per the surgens request after my hospital stay. I have to say, I am learning slowly what I can eat, it isnt bad. Hormel Chili, Corn Tortillas, Salad, Even Doritos which is like my fav Chips have gluten free chips. I bought me a pot and a strainer so I can steam some veggies.

ravenwoodglass Mentor
ravenwoodglass
Posted
Yes Nora they gave me an IV for antibiotics. They still have not let me know the results of the Celiac test.

The pain has returned from the Diverticulitus so I am probably going back to the hospital. The Surgen wants to do surgery and cut out about 7cm of intestens. The Antibiotics have not worked and the pain is returning. I am young to have these curcumstances already, but as in all of my life I guess all things come before their time.

I have alrweady switched to a none Gluten Diet per the surgens request after my hospital stay. I have to say, I am learning slowly what I can eat, it isnt bad. Hormel Chili, Corn Tortillas, Salad, Even Doritos which is like my fav Chips have gluten free chips. I bought me a pot and a strainer so I can steam some veggies.

I hope things get better for you soon. I am glad to hear you are going on the diet as it may help a bit. I have only had one attack of Diverticulitis since I was diagnosed and it really is hell to go through and it sounds like your attack was much worse than mine. I am going to make a suggestion here, you may want to go with as pure and natural foods as you can for a bit. Meats, rice, poultry, fruits and veggies etc. rather than processed foods. This will speed your healing a great deal. There are a lot of mainstream foods like Doritos that while gluten free by ingredients do have a high chance of CC. Right now you don't want to have to deal with a gluten cross contamination poisoning on top of trying to heal from the attack of diverticulitis.

One last note, 2 years before I was finally diagnosed celiac a colonscopy revealed what my GI doctor called the most extensive case of diverticulosis he had ever seen. I had outpouchings throughout my entire large intestines. A repeat colonoscopy last year after my one bout of diverticulitis since gluten-free, and after almost 5 years gluten-free living revealed that many of my diverticuli had disappeared. I could be wrong but I believe the violent D that I had on a daily basis with it's accompaning cramps and spasms contributed a lot to their formation. I hope you get over this soon and that if you do have to have surgery that you can recover quickly. Keep us posted.

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Andy-oh Rookie
Andy-oh
Posted
Yes Nora they gave me an IV for antibiotics. They still have not let me know the results of the Celiac test.

The pain has returned from the Diverticulitus so I am probably going back to the hospital. The Surgen wants to do surgery and cut out about 7cm of intestens. The Antibiotics have not worked and the pain is returning. I am young to have these curcumstances already, but as in all of my life I guess all things come before their time.

I have alrweady switched to a none Gluten Diet per the surgens request after my hospital stay. I have to say, I am learning slowly what I can eat, it isnt bad. Hormel Chili, Corn Tortillas, Salad, Even Doritos which is like my fav Chips have gluten free chips. I bought me a pot and a strainer so I can steam some veggies.

They have gluten free doritos ? please tell me more, ive been craving doritos, cheesy ones.

edit. i just found this list

Open Original Shared Link

Guest ohiodad
Guest ohiodad
Posted

well, I just got a call from the Nurse and test came back negitive on Celiac.

Talked to Dr. taking care of Diverticulitis and he wants me back in ER.

LoriC Apprentice
LoriC
Posted
LoriC, DH IS celiac. No need for further testing DH is celiac.

Here the government gives us about 300$ a month if one is diagnosed celiac by biopsy (blood test does not count) or diagnosed DH ......

nora

I"m sorry Nora, I don't remember saying DH wasn't celiacs, in fact my derm told me it was and since my last post on here, My gastro specialist said the same thing, I did have the blood tests Monday the 15th, waiting on results...and i have no clue about government money in the US for celiacs and i never even thought about it. Lori

OhioDad, I hope everything works out ok for you..my prayers and thoughts are with you :)

ravenwoodglass Mentor
ravenwoodglass
Posted
well, I just got a call from the Nurse and test came back negitive on Celiac.

Talked to Dr. taking care of Diverticulitis and he wants me back in ER.

Will be sending positive thoughts and prayers your way. I hope this resolves quickly and that you don't give up on the diet just because of a negative test result. I trusted my tests results for years, and for years they were wrong. And I got sicker and sicker. Obviously I am a firm believer in dietary response but right now that issue is really secondary. The issue that you have to deal with first is the divericulitis and I hope you heal soon. Keep us posted when you can.

gfpaperdoll Rookie
gfpaperdoll
Posted

Ohio DAD, please stay on the gluten free diet, ignore the blood test results, I am sure they did not run all 5 of them anyway...

I hope that you will try the diet & take the meds & try to wait before you have to have surgery to remove some of your colon... I think if you just go to plain whole foods - soft ones - no doritoes that you will heal without having to have your colon partly removed..

please continue to do your own research & do not depend on the doctors to figure everything out ofr you - don't let them be too quick to operate.

I had very damaged urethers from years of bladder infections & the docs insisted that they should put in plastic ones & remove my damaged ones - I refused. I am now healthy as can be & the urethers are fine. If I had let them do that my doc friend said that I would be dead by now...

oh & you should go totally grain free & dairy free & no soy, you will think it is a miracle...

Guest ohiodad
Guest ohiodad
Posted
Ohio DAD, please stay on the gluten free diet, ignore the blood test results, I am sure they did not run all 5 of them anyway...

I hope that you will try the diet & take the meds & try to wait before you have to have surgery to remove some of your colon... I think if you just go to plain whole foods - soft ones - no doritoes that you will heal without having to have your colon partly removed..

please continue to do your own research & do not depend on the doctors to figure everything out ofr you - don't let them be too quick to operate.

I had very damaged urethers from years of bladder infections & the docs insisted that they should put in plastic ones & remove my damaged ones - I refused. I am now healthy as can be & the urethers are fine. If I had let them do that my doc friend said that I would be dead by now...

oh & you should go totally grain free & dairy free & no soy, you will think it is a miracle...

You are correct, he only ran the most common the nurse told me. I am staying on the diet because it has already shown promise as far as the D is concerned. For the first time in years I have finally had some what of a solid stool. I am pleased with the results thus far and am going to stick with it. The pain continues with the Diverticulitos but I am continuing to take my meds in hopes I will not have to have the surgery just yet. I am grain free and Soy free, but not dairy.

mftnchn Explorer
mftnchn
Posted

I think I would try a week without dairy and see. So many of us are gluten, casein, and soy sensitive.

Also, you may have symptoms for awhile to any food harder to digest. It just takes awhile to heal.

ravenwoodglass Mentor
ravenwoodglass
Posted
You are correct, he only ran the most common the nurse told me. I am staying on the diet because it has already shown promise as far as the D is concerned. For the first time in years I have finally had some what of a solid stool. I am pleased with the results thus far and am going to stick with it. The pain continues with the Diverticulitos but I am continuing to take my meds in hopes I will not have to have the surgery just yet. I am grain free and Soy free, but not dairy.

I hope you have the same effect I did. My celiac was finally found because my GI surgeon wanted me in better condition before he did surgery. He sent me to a PT and she nagged me to see an allegist who could guide an elimination diet. I never had to go back to the surgeon and was able to keep the section of my intestines that he was going to remove. I sincerely hope the same happens for you.

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