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whtswrongwithme32

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whtswrongwithme32 Apprentice
whtswrongwithme32
Posted

Hello all,

 I have been researching and am almost certain I have celiac disease. You can read my previous post about being new here with questions. I am relieved (although still in pain and discomfort) that this could explain all my recent problems. What is tough though is that not many folks believe that this is what my problem would be...I am having bowel issues, right side abdominal pain, and nausea (along with fatigue, but I have been tired most of my life). I am anemic, have a vitamin b12 deficency. I am also allergic to deer meat and just read that "usually" someone allergic to deer meat has celiac or another autoimmune issue. My Grandpa tested positive for celiac. I do not want to have it, but I want to feel better. Why do people brush it off like, "oh, no that is not your problem" because people with that problem are not that "sick". Are you guys "that sick", did you have these issues? Are they better now that you KNOW you have it and have changed your diet? Just need support at the moment. I have been researching like crazy and the only other logical thing this could be is gall bladder, but I have not had the HIDA scan yet and the other test showed my gall bladder being alright. sigh, I'm ready for this nightmare to end.  thanks for letting me vent.

                             me

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GottaSki Mentor
GottaSki
Posted

Vents welcome. Frustration welcome....

....but please don't wish away days....they are precious.

Do something you will always remember, today.

Hang in there :)

ravenwoodglass Mentor
ravenwoodglass
Posted

" Why do people brush it off like, "oh, no that is not your problem" because people with that problem are not that "sick". Are you guys "that sick", did you have these issues?"

 

My jaw literally dropped when I read this. If you read my signature it will be easy to see why! Perhaps these folks are talking about people that are celiac and already on the diet? You sure do sound like you could be one of us.  It might be a good idea to call the doc's office and ask to speak to a nurse. Let them know that you have celiac in the family and that you would like to get a full celiac panel and total IGA run now so the test results are ready when you see the doctor. You have suffered long enough so hopefully they will let you pick up the script for the blood draw.

Do not go gluten free or gluten light until after all testing you choose to do is finished. 

Hope you feeling better soon.

jddh Contributor
jddh
Posted

Fast-track those tests! Getting back information—positive diagnosis nor not—will ease your mind and let you plan "next steps." That ought to feel better in itself. Your symptoms could perhaps be exacerbated by the worry and anxiety around getting a diagnosis.

Most say that biopsy is the gold standard, so if it's possible to do that, might be valuable. However villous atrophy is usually the visual giveaway, which if I read your other thread correctly, you did not have.

Like the pros say, don't give up gluten till you are tested—you need to show your body chemistry the way it's been while you've been suffering.

whtswrongwithme32 Apprentice
whtswrongwithme32
Posted
  • Author

Ravenwood, Was the cancer your Mom died of a "rare" cancer that shows up in the lymphnodes? My Mom passed of this cancer back in 2005.

whtswrongwithme32 Apprentice
whtswrongwithme32
Posted
  • Author

JDDH,

    True, the symptoms could be ampliphied from my frustration. So they can usually just see the damage during the Endo without taking a biopsy? I was not aware. I'm just tired of feeling like this with no answers. I know a lot of folks go years though.  

nvsmom Community Regular
nvsmom
Posted

JDDH,

    True, the symptoms could be ampliphied from my frustration. So they can usually just see the damage during the Endo without taking a biopsy? I was not aware. I'm just tired of feeling like this with no answers. I know a lot of folks go years though.  

No they usually can not see the damage visually during an endoscopy.  There are often signs of inflammation but the vast majority of celiacs need a biopsy for their damage to be seen.

 

Hang in there. Many of us have had our problems brushed off or were told it's all in our head.  I almost think it should be a sign of celiac disease.  ;) People often come around once they see you feeling and looking much better after you've been on the gluten-free diet a few months.

 

If all the tests come back negative, don't forget that it could be non-celiac gluten sensitivity (NCGS) which has almost all of the same symptoms as celiac disease, minus villi damage and the DH skin rash.  There are a fair number of people with NCGS around here who had symptoms more severe than mine - it's not a thing to be ignored.

 

I hope you are feeling better soon.  (hug)

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tommysmommy Newbie
tommysmommy
Posted

Yes, your symptoms give you every reason to consider celiac or even NCGS. And forget what others say, IMO gluten related disorders are the most misunderstood of all health issues and YES IT IS THAT BAD, for some it is way worse. Don't fear a diagnosis, it's good to have answers and even better to have an issue that doesn't require meds or treatments - it's something you control by the food you eat - overwhelming as it might seem at first, if it makes you feel better, it is worth the effort!

ravenwoodglass Mentor
ravenwoodglass
Posted

Ravenwood, Was the cancer your Mom died of a "rare" cancer that shows up in the lymphnodes? My Mom passed of this cancer back in 2005.

 

No it wasn't a form of lymphoma. Was your Mom celiac?  I think celiac can be associated with cancer of the lymph system but don't have any links. I don't think it is common though. 

I hope you get some answers soon. After your testing is done you can start a trial of the diet. Do be sure to read the celiac 101 thread at the top of the coping page. It will give you a lot of good info for what you will need to do to be safe once you are gluten free. 

bartfull Rising Star
bartfull
Posted

 Why do people brush it off like, "oh, no that is not your problem" because people with that problem are not that "sick?

 

Back in the old days when my Mom was diganosed (the 80's) I think it was because no one had ever heard of it and they never saw her when she was in the bathroom for hours at a time. :(

 

Now that people are more celiac aware, it's probably because so many people who are truly NOT sick are jumping on the gluten-free diet trend because it's the latest fad. :angry:

 

We can't win!

whtswrongwithme32 Apprentice
whtswrongwithme32
Posted
  • Author

"Q. Prior to this study, what did researchers believe about the risk of lymphoma in people with celiac disease?  Has this study proved or disproved their beliefs?

A. The link between celiac disease and lymphoma has been long known, and this study is consistent with prior findings that patients with celiac disease are at increased risk of developing lymphoma. What is new here is that the risk of lymphoma is not equally distributed among all patients with celiac disease. Rather, those who heal on follow-up biopsy have a significantly lower risk of lymphoma, approaching that of the general population, while those with persistent villous atrophy have an increased risk." source:  Open Original Shared Link

1desperateladysaved Proficient
1desperateladysaved
Posted

People with celiac can get very sick.  There are over 300 symptoms.  When a body can't absorb enough food anything and EVERYTHING is bound to go round.  My Dad saw Jennifer Exposito on television and marveled to me that she got very ill with that disease. She collapsed on stage and lost a tooth! This was no surprise to me one symptom of my trouble was a diving blood pressure after standing.  That is a truly dangerous symptom.  Keep looking for the cause of your symptoms.

 

Dee

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