Am I Crazy? Non-compliance...

[dustina]

I went back for a 3 month checkup at the GI doc today. I finished up 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.

Anyway...so I go back today and my old doc left. While she insisted that she was nearly certain I did NOT have celiac disease, the new doc takes a quick glance through my chart and says she is nearly certain that I DO. She also cites new research that 1 month is not a long enough trial to see if the gluten-free diet works. So, she asks me if I want to comply to a 6 month diet. I was horrified. I was so sure I was done with that lifestyle and was infinitely thankful to be back on normal food. Tomorrow I start my senior year of college. After that I'll have likely the busiest years of my life in physician assistant school. Just the thought of how hard it was to change for one month made the possibility of 6 (or forever) seemingly unbearable. I could hardly speak and I felt tears welling in my eyes, but I said I just couldn't do it. Between work and school and the mountains of stress I just can't fathom cooking all my own meals and being "that guy" that has to send his food back and make special requests or just not eat out at all. And my doctor didn't argue! She said she understood and hadn't even been tested herself for fear SHE might have celiac disease.

I know the risks. I know I'm risking malignant cancer just so I can avoid the worries that plagued me on the diet before. I don't have celiac disease (if indeed I do) severely enough that it affects my weight or my lifestyle and I have reason to believe my diarrhea will subside when I finish college and settle down, as did my mom's.

Anyway, the purpose for the this long rant is to ask, am I crazy? Has anyone else here deliberately went against medical advice for a period of time just b/c the prospect of the diet was overwhelming? It's just that it isn't going to make me "feel" any better. Right now I feel fine on my meds. But at the same time the idea that I'm risking cancer is horrifying. And as someone going into the medical field, I never thought I'd tell a doctor "No."

I know it will only get harder to start the diet with time, and that I'm just constantly increasing my cancer risk if indeed I do have celiac disease, but is it worth waiting to see if my symptoms subside after college, or if they worsen with time? Should I get another blood test or biopsy. I don't know what I'm grasping for here, but if anyone has made it through this long post, I'd take any advice.

-Dustin

[Alexolua]

Has anyone else here deliberately went against medical advice for a period of time just b/c the prospect of the diet was overwhelming?

I'm in the other boat, I'm going against my GI Doc's belief I don't have celiac disease, and sticking with the diet (He isn't that knowledgable and I got tested by enterolab saying I do need to avoid gluten).

The diet can be hard, and it seemed impossible when I started too. I have learned to adapt, and I have to cut out all dairy as well. Granted, I didn't have as many things taking up my time as it sounds like you do, but the desire to get healthy and have a life, was much stronger. So yeah.. I have the added motivation of having a lot of problems. Sounds like you don't as much?

Though I do agree with your new doctor, it can take 3-6 months for results to start showing up on the diet. I think a few on these boards have had to wait longer, unfortunately.

Since your tests were inconclusive, you could try having your labs sent to a Celiac specialist to have them look at it? Have a specialist look at your biopsies, if possible?

Or another way you can get tested, which seems to be a lot more accurate than those tests is enterolab. Have you heard of them? Can find them at enterolab.com.

They test your stool for antibodies to gluten, and also do genetic testing for genetic markers for celiac disease and gluten intolerance. In my not so expert opinion, I'd say that could be the better way to go, to know for sure. Though trying to get some experts to look at your biopsy could help.

Some here might beable to help if you post the results of the blood work as well.

And here's another testing method mentioned in this thread. Though seems less common: Open Original Shared Link

Hope some of this helped! But, I'd say try to get more testing, rather than get worse. Being in the really worse boat, I'd rather not see someone else join me. =)

[lovegrov]

I'm not a doctor so I obviously can't tell you whether you do or don't have celiac disease, but if your doctor is actually convinced you do have it, I think she's being exceedingly irresponsible to tell you it's OK not to go gluten-free.

More than 20 years ago I was diagnosed with DH. Although my doctor kept urging me to go gluten-free (no mention of the celiac connection) I resisted because I didn't think I could continue my career as a newspaper reporter while eating gluten-free. 20 years later the celiac hit. I ended up in the hospital for 11 days and missed 10 weeks of work. I couldn't walk by myself or summon up the energy to dial a phone. It took 10 months to regain all my strength.

You might get by just fine. But if you are borderline celiac or you do have celiac and it gets worse you might end up having to drop out of school. Good luck.

richard

[tarnalberry]

Actually, it doesn't get harder over time. The first month is the hardest, by far. And I think somewhere between the first and second months, there's a hump, after which is does become much easier. "Cooking" for yourself doesn't have to take more than a few minutes, of course, and returning food becomes more about attitude than the food itself after a while.

Since you're studying medicine, I would hope you'd stick with the diet. You know, from your studies, that you can't have antibodies to something unless your immune system doesn't like it. The concept of "borderline gluten intolerant" is about the imprecise nature of labs and the people who read the lab work - your body is gluten intolerant or not.

[Guest ~wAvE WeT sAnD~]

Hi Dustin!!!

I'm a college Junior who was recently diagnosed. Cooking may seem tough at first, but it will be less tedious when you find the best possible mainstream/gluten-free brand combination. Have you spoken to the Food Services Committee? They've been extremely helpful! I have been giving them celiac disease literature from the Internet and my doctor. You might be surprised--some personnel may have heard of Celiac but don't fully grasp the severity of the disease.

Good luck! You made it to your senior year!

Sincerely,

[crc0622]

How will you be able to convince your patients to do things that are in the best interest of their health when you aren't willing to do so yourself? (Conjurs up pictures of big fat doc who chain smokes telling pt to lose weight and stop smoking. )

I don't mean to be critical to you in any way. I was always the type of person who thought anyone with any food restrictions (vegeterian, etc.) was just being picky and silly. And yet yesterday I was served a salad with a big pile of fried onions on top (after requesting it without). I was with a group of co-workers and the last thing I wanted to do was make waves, but I sent it back. Came out the second time with crumbs where they had just scraped off the onions. I found the waitress, explained the problem nicely and got a new salad. No one cared but me. We make a lot bigger issue of it than most people, and the ones who can't understand are jerks.

This is important to your long-term well-being. You are here on this forum asking the questions because you have doubts yourself. You know the right thing to do. You may hope someone will say "yeah, go ahead and eat what you want." But I don't think you'll find that here!

Celeste

[kathyhay]

I think that it is YOUR health we are talking about, so if you are willing to treat the symptoms and just live with it, then that is totally your choice. You can always be tested again. You are young, and you know about celiac disease, you have your whole life to think about it and change your mind. Just go with your conscience. If you really can't handle the diet at this point in your life, but you can handle other symptoms(of course, assuming that it is celiac disease) then don't go gluten-free. The hardest part really is not knowing for sure if you are gluten intolerant or not. If it were a cut-and-dry yes or no thing, I'm sure it would be way easier to stick to the gluten-free diet if the tests said, "yes, you are positive for celiac".

[dustina]

Thanks for all the input. I think it's best that I do another trial and the sooner the better as it's the only way to know for sure if it helps. Unfortuneatly, I had just purchased about $100 worth of gluten-laden groceries for the semester. It's amazing how EVERYTHING I normally eat short of lunch meat and apple sauce might be inedible, haha. I'm going to give myself some time to get the semester rolling and adjust to work and school and reassess in a couple of weeks. I certainly want my blood retested when I return to the doctor, and I would have mentioned this at the time but seeing as I was so flabbergasted that something I thought was out of the picture was thrown back at me, I didn't think of it.

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.

One final thought. It was difficult on the 1 month trial diet to see how I really improved or didn't improve. As I normally stay medicated with immodium so I don't end up having what I call "attacks," I don't have a baseline to know what a normal unmedicated month is like. Nor do I really WANT to know . But it seemed to me that stretches of 2-3 days with improvment might have been attributed to a "better" diet, not necessarily a lack of gluten. I was eating vegetables, fruits, meat and cheese (and some raunchy gluten-free bread) instead of my usually college microwave greasiness. I don't know if anyone can relate to this as those who don't have celiac disease probably don't stick around these forums, but I thought I'd mention this anyway.

Thanks all,

Dustin

[debmidge]

Dustin

Don't be so willing to hang your hat on the first doctor's potential mis-diagnosis. My husband has been misdiagnosed for over 25 years and is terribly, terribly ill from not being gluten free for all those years. I applaud your second doctor for going out on a limb to suggest, even though your test results are mixed, that you may have celiac disease. Your test results may be borderline because you may not have been celiac for very long and your antibodies aren't high enough yet to register to push you over the borderline mark.

Admit that you might have celiac and go gluten-free for the 6 mos that the doc suggested. Yes the store-bought gluten-free bread is terrible; then go to Gluten Free Pantry in internet or health food store and get a gluten-free bread mix. You had to eventually make your own food at some point in your life so now's a good time to learn how to take care of yourself because no one else is going to do it.

Take a deep breath, learn the ropes and hopefully your condition will improve. If you don't take the proper steps now (i.e., going gluten free) you might regret it in the future. For example, intestinal damage from years of eating gluten may not heal 100%. The body can only take so much.

Had my husband known from the beginning that he had celiac, he wouldn't be in this condition. I am speaking from our experience and don't have time to couch my words in pretty sentences as I must present you with the facts as I see them.

D.

[celiacfreeman]

insiste on the tTg test, I understand this is conclusive and the mail order test

at entrolab that conclusive. Why wonder.

[GEF]

tTg test, I understand this is conclusive

The Ttg is pretty sensitive & specific, however for damage in a celiac, not necessarily for gluten intolerance.

It is a difficult situation that you're in and I can understand why you feel so on the fence about it. I personally am not gluten-free yet because I have a wedding coming up and need I say more? But, I take the intolerance seriously and I'm doing my research now and preparing to go 100% as soon as possible. My fiance is even going gluten-free (who hasn't been tested yet) with me, and that's been of great support. I could've gone gluten-free a year ago, but I didn't have much support from my doctor and my antibodies weren't very high... I've since gotten over that, had blood tests re-run and now the intolerance is worse.

Perhaps you will find support in befriending another celiac while you're at school. Is is possible that you would be interested in a local support group?

Irregardless of your decision, please know that we'll always be here to support you in any way we can.

Gretchen

[tarnalberry]

I agree with GEF, the tTg test is a very good one, but NOT the end-all-be-all that many doctors and papers want to make it. Mine was negative, and the only positive test I had was Anti-reticulin IgG. (Yes, I've heard that a single elevated IgG can indicate "other things" but I still have not been able to actually identify one other thing that an elevated anti-reticulin IgG can denote.) Combined with a positve result trying the diet, and symptoms when doing a gluten challenge, I think that's answer enough for me.

I figure I have two choices: I can eat all the old foods I loved and feel less than ideal (and my symptoms were never that bad at all), or I can find a number of new foods to love (and I have) and feel better. That one of those choices could shorten my life or prevent me from having kids and the other choice wouldn't is practically just a bonus in the decision, because I value how I FEEL so highly.

[GEF]

I figure I have two choices: I can eat all the old foods I loved and feel less than ideal (and my symptoms were never that bad at all), or I can find a number of new foods to love (and I have) and feel better. That one of those choices could shorten my life or prevent me from having kids and the other choice wouldn't is practically just a bonus in the decision, because I value how I FEEL so highly.

Tiffany, you really just said that so well...

[Niteyx13]

This is a new way to look at the disease. When I found out about celiac disease I was almost in tears at the relief of knowing that there is a possible answer to my sickness and chronic fatigue. At 28 years old I am way too young to be feeling so crappy, and for such a long time - 10 years! Not eating gluten sucks, but feeling sick, lethargic, extremely tired, and dealing with the constipation and gas sucks sooooo much more! My opinion is please stay on the diet, you don't want it to get to a point of where imodium just doesn't do it anymore. I seriously thought I was dying for a very very long time, and I thought doctors just didn't care about my problems. It can be very scary stuff!

[Alexolua]

At 28 years old I am way too young to be feeling so crappy, and for such a long time - 10 years!

I'm 27, and in the same boat.. about 10 years now!

I pretty much agree with what everyone is saying. Though ultimately the choice is your's Dustina. Though a lot of us here would have love to known gluten was bad for us, before we got as bad as we got. =)

[YankeeDB]

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?

[clanning]

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.

Charlotte

[gf4life]

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.

Dustin,

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.

Charlotte,

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,

Mariann

[tarnalberry]

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.

[EmilyP2004]

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.