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Am I Crazy? Non-compliance...

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Posted 26 August 2004 - 01:17 PM

Dustin, The risk of cancer might not be the only possibility in your future if you do have celiac disease and continue eating gluten.

My mother was never diagnosed (as I have been) although she had many symptoms, particularly bowel problems. celiac disease has been linked to the following conditions, all of which my mother had beginning around age 35: rheumatoid arthritis, neuropathy, thyroid problems, emotional problems (anxiety & depression) and, finally, severe dementia. (There are more such as osteoporosis which celiac men get with some frequency due to malabsorption.) I think there is a domino effect when nutrients are not being absorbed properly for many years.

Anyway, my mother spent the last 15 years of her life unable to walk and in constant foot pain. The dementia disorder she had could never be defined by her doctors but it had every bit of the memory and personality changes we associate with Alzheimers. Also, her emotional and physical pain from age 35 to her death at 84 made her a very unhappy person most of the time.

Interestingly, when she had a stomach tube put in when she became unable to swallow and was in a nursing home, she started to feel better--memory improved, pain subsided. I didn't make the connection until I was diagnosed myself that perhaps the feeding tube solution was gluten-free.

Perhaps you would like to try enterolab's stool test which may be more sensitve than the blood tests. See www. enterolab.com. (I have no affiliation).

The diet may seem arduous at first, and it IS an adjustment, but it is not as bad as having to prepare every single meal from scratch. (A grieving process for the old diet is natural, though.)

Explore the many gluten-free groceries online and you may decide it's not so bad. There are many different breads to try and there are even simple mixes (add a few ingredients, mix, bake) that are downright delicious. The pastas are also very good. There are frozen dinners and off-the-shelf box dinners, many cookies and crackers, numerous hot and cold cereals.

All of us have some challenges in our lives and no one has a perfect existence--to me, I'm happy to have celiac disease instead of the bile duct cancer my brother has just been diagnosed with (he tested negative for celiac disease but I still wonder.......

Perhaps dealing with this disease (assuming you do have it) will help increase your empathy for your future patients?
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Posted 27 August 2004 - 05:22 PM

Dustin, I was told 10 yrs ago that I had non-tropical sprue and that was it. I became very ill several years ago, seen a new doctor and that is when I was told about being gluten-free. I took it serious for a while but stopped soon after. I have not been gluten-free for about 6 yrs. I'm 34 yrs old and have been told that my life expectance is 3 more yrs.. I too work in the medical field and should know better. I have been trying since March to be gluten-free but sooooo hard. Very little support from family and friends. They are only supportive when I've become very ill or more ill than usual.

It is hard being/cooking/eating gluten-free. For most, the food sucks!! Since joinging this forum earlier this week, I've made some of the recipes and they are good. You will need to take A LOT of time to shop and look for gluten-free free foods.

I have already had cancer and every time I see my GI doc at work he tells me how worried he is. He's very astute in what he tells me and my husband. My yearly lab's he tell's us that he is not going to be surprised if he finds cancer in my intestines and neither should we. Luckily he hasn't as of yet but that doesn't mean that day is not coming. It has hit me hard this week.... my children are only 9 and 12. What will they do w/ me? I can't imagine it and it saddens me to think that "I've done this to myself, not anyone else." Then I think "why stop, the damage is done, I'm misserable." This is hard.

Good luck on try, try as hard as you can. I know I am.

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Posted 27 August 2004 - 06:32 PM

I guess I'm mostly frustrated because of the mixed signals. The doctor who spent several visits with me, did thorough histories and told me how she discussed my blood and stool tests, biopsy results, and diet results with other colleagues tells me she's nearly certain I don't have celiac disease. Then, the new doc takes a quick glance over my chart and says I do.

Don't assume that the doctor's collegues knew anymore about Celiac than she did. I have noticed that most doctors "hang out" with other like minded doctors. My doctor is very closed minded on the subject of celiac disease and I am pretty sure that the other doctors in the same practice are like her. It takes a skilled and open-minded doctor to look at lab results and say Celiac.

I am so sorry for your situation. I'm 32 with three children, ages 5, 8, & 10, and I can't imagine the thought of them having to be without me. My mom died when my younger siblings were still young and it broke my heart to know my 4 year old sister won't have very many memories of our mom. I would try to stick to the diet as best as you can, since you don't have a cancer diagnosis yet (and hopefully you won't get one!). And if it does end up to be cancer, being gluten-free just might be able to lengthen the time you have with your family. You are in my prayers.

God bless,
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children



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Posted 27 August 2004 - 06:56 PM

clanning, you said:

'Then I think "why stop, the damage is done, I'm misserable."'

The damage is done, but it is not irreversible. You're miserable now, but learning anything new, learning anything new that is difficult and very contrary to what you've known for so long, and learning anything new that is difficult, contrary and you get no support in is what makes you miserable. Look at what you've already told us - in just a few days you've gone from thinking all gluten-free food was nasty (or "craptastic", as my husband and I sometimes describe things ;-) ) to having made two rather tasty dishes. In a FEW DAYS! That's rather good progress, for a busy mom and wife no less!

If you can't do it for yourself, if you don't think you're worth making that effort, then do it for your kids. I grew up without a mom, and it sounds like they need someone who is compasionate to help round out their childhood experience, which I know from my experience that it's no fun to grow up without.

Could you ever get your husband to post or read on here? (I promise I won't bash!) I really can't believe that he would want you to do something that could financially ruin the family and put you in the grave, so he must not really understand at some level why this is as important as it is. Maybe all of the friendly and helpful folks here could help calm some of his fears (if his lack of support stems from a fear) or help him understand from a better view. There are some non-celiacs here with celiac family members or significant others who he might be better able to relate to, even.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA



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Posted 28 August 2004 - 05:23 AM

You say:

.....a monthlong Gluten abstainance in April and it was horrid. Before that, my test results were borderline in all cases. I had borderline blood tests which "just maybe" indicated I should have the biopsy just to "rule out" celiac disease. The biopsy came back inconclusive. They detected the presence of antibodies that "might" be indicative of early onset celiac disease. I took the diet very seriously for the monthlong time period. I had some improvement, but it was far from alleviating my diarrhea. So I was prescribed Elavil 50mg (antidepressant which might calm my nerves and it slows peristalsis) and it helped "some" as well. I can live a perfectly normal life on the Elavil and immodium daily........


It is NOT normal to have to take Elavil and immodium daily to have a normal life.

You may have celiac disease & you are not damaged enough to react to blood tests or to show up on a biopsy.

It may be that you will show up later in life to have celiac disease - after sufficient damage has been caused.

What does seem certain is that you have a health problem.

If you are quite sure that you have been strictly gluten-free for at least one month and given that your diarrhoea has not stopped & you do not feel better I would think there must be some problem other than celiac disease.

It is very difficult (at first) to be very sure you are cutting out all gluten- eg if you eat out you may have contamination from gluten ingredients in the restaurant, if you use an ordinary bread board or knife you may get gluten contamination, if you eat any processed foods these may contain small amounts of gluten, any soft drink/ alcoholic drink like a cocktail may contain gluten etc etc.

To make a fair gluten-free trial you should start from scratch and use only pure gluten-free foods in gluten-free surroundings. My sister in law did not understand,until I explained, that I could not safely eat vegetables chopped on her breadboard.

If you are getting even a tiny amount of gluten (a few crumbs of ordinary bread) you can still have diarrhoea if you have celiac disease. I know this because I did not realise at first that my gluten-free bread should never be toasted in the family toaster. That was the cause of my diarrhoea early on when I started GFD. When I got & used my own new gluten-free toaster my diarrhoea stopped.

You should try to find out what is causing your ill health - please go back and seek medical help.

There must be more tests that can help you find out what is wrong with you- as long as you are convinced you have given the gluten-free diet a fair trial.

There is no point in you going gluten-free if you do not have celiac disease - so my advice is to find out just what is causing you to be ill (if you know you have been strictly gluten-free and it has not helped you feel better).

Hope you find out what is wrong soon.
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