To Eat Gluten Free Or Not

[mary lynne]

Hi. New user here. my mom was diagnosed with Celiac about 6 weeks ago. Her dr suggested I be tested (I'm 27) since it is hereditary. My Bloodwork came back very positive and the GI highly suggested that I have the biopsy (scheduled for July 11th) and if it's also positive to go on the diet. BUT...i don't really have any symptoms. The dr was very insistent with my mom that celiacs is highly related to cancer and diabetes, and other things, but when I met him, he couldn't convince me of it. He said they are related, but studies haven't been done to see how likely. And he said to me that the villi replace themselves every 2 weeks, therefore no permanent damage can be made by continuing to eat gluten, but he gave my mom the opposite impression. I'm very confused. Should I even have the test? And If I do and it is positive, why should I eat that diet if i don't have any symptoms and it can't cause permanent damage? The only symptoms I can think that I may have is frequent bowel movements (frequent meaning about once a day) and once in awhile I get severe stomach aches, and I often just feel kind of in a dream world. (I read another post where someone described it as a fog) but none of these are severe. I think if I had the horrid diarreah that many people have or even the anemia that my mom has, I'd be happy to do the diet....but I don't....HELP!!! advice???

[queenofhearts]

Hi. New user here. my mom was diagnosed with Celiac about 6 weeks ago. Her dr suggested I be tested (I'm 27) since it is hereditary. My Bloodwork came back very positive and the GI highly suggested that I have the biopsy (scheduled for July 11th) and if it's also positive to go on the diet. BUT...i don't really have any symptoms. The dr was very insistent with my mom that celiacs is highly related to cancer and diabetes, and other things, but when I met him, he couldn't convince me of it. He said they are related, but studies haven't been done to see how likely. And he said to me that the villi replace themselves every 2 weeks, therefore no permanent damage can be made by continuing to eat gluten, but he gave my mom the opposite impression. I'm very confused. Should I even have the test? And If I do and it is positive, why should I eat that diet if i don't have any symptoms and it can't cause permanent damage? The only symptoms I can think that I may have is frequent bowel movements (frequent meaning about once a day) and once in awhile I get severe stomach aches, and I often just feel kind of in a dream world. (I read another post where someone described it as a fog) but none of these are severe. I think if I had the horrid diarreah that many people have or even the anemia that my mom has, I'd be happy to do the diet....but I don't....HELP!!! advice???

If I were you, I would absolutely take the test now, while you are still consuming gluten. And I'm afraid your doctor is not quite accurate that no permanent damage is done by eating gluten. For one thing, with damaged villi, your body is not absorbing nutrients properly & deficiencies can cause all sorts of lasting problems, some fairly stealthy (like osteoporosis). There is also a much higher incidence of stomach cancers in gluten-consuming Celiacs.

I was diagnosed at 50 after years of misdiagnosis, & oh how I wish I'd been diagnosed at your age. Then I could have headed my ailments off at the pass, so to speak, instead of having to w...a...i...t... for them to heal. I recently read a study that those diagnosed over 30 took much longer to recover than folks your age, as I'm sure your mom is aware.

Yes, it's a pain to be gluten-free, but you do get used to it after a while, & your long-term health prognosis is much much better if you stop "poisoning" your body with gluten.

Bite the bullet, Mary Lynne! You need to know the truth so you can protect yourself.

If you need moral support you will find TONS of it on this board.

All best wishes,

Leah

[mary lynne]

If I were you, I would absolutely take the test now, while you are still consuming gluten. And I'm afraid your doctor is not quite accurate that no permanent damage is done by eating gluten. For one thing, with damaged villi, your body is not absorbing nutrients properly & deficiencies can cause all sorts of lasting problems, some fairly stealthy (like osteoporosis). There is also a much higher incidence of stomach cancers in gluten-consuming Celiacs.

I was diagnosed at 50 after years of misdiagnosis, & oh how I wish I'd been diagnosed at your age. Then I could have headed my ailments off at the pass, so to speak, instead of having to w...a...i...t... for them to heal. I recently read a study that those diagnosed over 30 took much longer to recover than folks your age, as I'm sure your mom is aware.

Yes, it's a pain to be gluten-free, but you do get used to it after a while, & your long-term health prognosis is much much better if you stop "poisoning" your body with gluten.

Bite the bullet, Mary Lynne! You need to know the truth so you can protect yourself.

If you need moral support you will find TONS of it on this board.

All best wishes,

Leah

Thanks Leah! the Dr did talk about permanent damage to other things showing up later, like you mentioned. He was saying that the villi can't be permanently damaged.... He did mention that usually symptoms show up in people when they are over 50 (my mom is 51, but if you look back over her life, Celiac makes sense. she'd just never heard of it until her biopsy) anyways, If it is a serious thing, and it's highly likely that I will have some issues later, then I have no problem doing the diet. But I don't want to be over worried about things that "might possibly" come up later......

[Ursa Major]

Hi Mary Lynne, and welcome to our board. Well, your doctor gave you some right and some wrong information. He misinformed you when he claimed that no permanent damage to the villi could be done. Yes, it can, especially if you keep eating gluten. There is a point of no return, where your villi won't be able to completely heal again, no matter what you do. For people who are finally diagnosed past the age of 50 (as I have been), it is often too late to undo all the damage.

People with celiac disease often have other intolerances and allergies as well. With many they will go away after being on the gluten-free diet. But it appears that I may be stuck with having hardly anything to eat for the rest of my life. I was so sick with things like fibromyalgia all my life (getting progressively worse) that it is very unlikely I'll recover fully.

It is also a proven fact that people with celiac disease who are not on a gluten-free diet live on average ten years less than other people, and very often it is intestinal cancer that kills them. Many here have, like I do, fibromyalgia and myofascial pain syndrome. Trust me, you don't want it! Severe thyroid problems are common too, as are diabetes and others.

In fact, there are 200 symptoms of celiac disease, most of which many doctors have never heard of.

Anyway, if you don't have anemia yet, or diarrhea (or constipation), weight loss or weight gain, terrible joint and muscle pain, headaches, backaches, severe depression, osteoporosis, malnutrition, vitamin deficiencies and many more, you will at some point, it's only a matter of time. And those are only some of the most common symptoms, there are many, many more.

If you ignore your diagnosis and won't go on the diet it's your choice, of course, nobody can force you. But you would undoubtedly regret it at some point. I am sure you'll hear from the other people here who did just that, and finally had to do something, because they were getting very ill.

I really hope, for your sake, that you will take this seriously. And actually, your bloodwork being very high is already enough of a diagnosis, even if your biopsy comes back negative. The biopsy can only rule in celiac disease, it can never rule it out. Because if either your villi aren't damaged enough yet to show up as celiac disease, or they miss the damaged spots when taking the biopsies, it will be negative, even if you really do have celiac disease.

[tarnalberry]

if you have celiac, but don't follow the diet, you increase your risk of developing:

• nutritional deficiencies (anemia, osteoporosis, etc.)
  
• rheumatoid arthritis, diabetes (t1), and other auto-immune disorders
  
• neurologic manifestations (particularly neuropathy)
  
• on average, a 10 year reduction in life-span
  
• lymphoma and/or digestive system cancers
  

those are the biggies, anyway, and they happen to people who do not have any gastro symptoms as well.

[mary lynne]

if you have celiac, but don't follow the diet, you increase your risk of developing:

• nutritional deficiencies (anemia, osteoporosis, etc.)
  
• rheumatoid arthritis, diabetes (t1), and other auto-immune disorders
  
• neurologic manifestations (particularly neuropathy)
  
• on average, a 10 year reduction in life-span
  
• lymphoma and/or digestive system cancers
  

those are the biggies, anyway, and they happen to people who do not have any gastro symptoms as well.

I really don't mind doing the diet. we're living with my parents while we are in between houses and my mom's been diagnosed and started the diet since we've been here, so I've seen the process. and it doesn't seem too bad and some of the foods seem healthier actually (like corn pasta instead of the regular spagetti with unreadable ingredients!) anyways...we were all ready to be diagnosed and do the diet, but after the consult w/ the dr my husband & I just weren't as convinced that the "increased risk of"....was that significance of an increase from people w/o celiac...but maybe my dr was having an off day of some sorts. he seemed more serious w/ my mom.

so, i'm ok w/ doing the diet if the risk of developing more serious issues is a significant increase, but if not, i don't want to spend my life worrying about things I might get... i love reading all your thoughts...THANKS ThANKS THANKS! ya'll are helping my husband and I make decisions.

[luvs2eat]

I think it would be hard to embrace this diet if no symptoms were obvious. My symptoms are obvious so the choice is a no brainer... but I echo what everyone else has said here... there are too many reasons TO follow a gluten-free diet, and not many NOT to.

[Lisa]

Mary Lynne, if you mothers doctor is concerned about her health, up yourself in her shoes in 20 something years, if not earlier.

You now, have a chance for good health in the future If you have a few symptoms now, I can assure you that you will have the more severe symptoms later. If not now, it could be a month from now or a few years from now, but it will happen.

It is all a matter of choice. I also am 51, and I did not know about Celiac until last August. Had I known what I know now, and had a doctor who could have helped me 20 years ago....I would not be here struggling with this irreversable disease, that I currently am struggling with physically, emotionally and socially. It has been quite a trip.

With the opportunity before you, I do hope that you will choose well. I also think that you a brave entering into a new work and ask the questions on your mind. Please take some time to think about all that you have read here. Life is all about choices. It is your choice. Take time to read and think, then make your choice about how to handle the rest of your life. A Celicac life is not all that difficult, and quite a bit more heathy.

Hope this helps.... Lisa

[Rachel--24]

I agree with all the previous posts. Whenever I read a post such as yours where a person has found out about this before they've had to go through many years of pain and illness I think to myself "This person has just been given a gift". Its almost like a free pass...you get to see into the future and you have the ability to prevent all the bad stuff from occurring down the road. Very lucky.

[skbird]

Here's another thought. Things changed about my health and how I experience life since going gluten free which I did not expect or know were problems to begin with. Mood swings, (cranky!!!!) anger, depression were some of the weirder. Insomnia and migraines were other things I didn't think would be related. Also, I keep finding evidence of the stomach problems I didn't realize I even had, or to what degree, each time I open an old purse, suitcase, cosmetics bag, because they all have stashes of acid reducers, anti-diarrhea, anti-constipation, or anti-gas pills in them somewhere. It actually makes me laugh now to find them because I don't need them anymore, except for when I've been glutened.

I'm not sure why your doctor didn't stress the importance of this all to you, but I can also tell you my doctor(s) have taken the opinion that I know more about it than they do, so they don't get too serious about it. And there's a lot many doctors still don't seem to understand about this disease.

It's cool you're staying with your mom right now, because it's a great time to practice the gluten free diet and be supportive during the ups and downs of it all.

Take care and keep reading - you'll learn a lot!

Stephanie

[Fiddle-Faddle]

Hi, Mary Lynne, welcome aboard!

I just wanted to let you know I stopped eating gluten about 6 months ago--and only one of my blood tests (the IgG) was elevated. I did not have a biopsy, and, except for a one0time horrible rash (which led to the blood test), I was relatively symptom-free. That is, I thought I was symptom-free until I stopped eating gluten, and suddenly I felt so much BETTER!

I'm sticking with the diet, partly because I feel so much better, but also because I already have thyroid disease, and I do NOT want ANY other autoimmune diseases, and it seems pretty clear that others will follow if I continue to eat gluten.

If your blood tests are positive, that means that you are already producing large amounts of anti-gliadin antibody; in toher words, your immune system already has targeted gluten as something to be destroyed. The problem is, your immune system will also begin to target your own body (most likely the villi, but possibly your skin, the pancreas, your esophagus, your thyroid, and all kinds of others) should you continue to eat gluten.

The good news is, a gluten-free diet is WAY easier and tastier than thought it would be. Check out the recipes section of this board, and check out a few cookboooks. Breads, cakes, cookies, pancakes, waffles--they are all possible with "other " flours (rice flour, potato starch, corn starch, etc.) and there are some cookbooks out there written by GENIUSES who make these recipes taste darn close to the original--WITHOUT THE ADDICTIVENESS OF THE ORIGINAL. Pasta is a no-brainer, thanks to Kinnikinnick brown rice pasta, which tastes identical to "real" pasta (the corn ones don't, but they're not bad, just different).

Everyone seems to agree that the BEST cake/bread cookbook is by Annalise Roberts. I just got her book and made a cake yesterday, and I was amazed that it was the best cake I've ever made. I was just expecting it to be passable.

I hope you hang around, no matter what you decide!

[mary lynne]

wow. I posted my big question about 6:30 tonight, and in 4 hours I"ve got lots of great advice and support. Many Many thanks for all your input. my husband & mom are also reading these and it's helping them too. and helping aid our discussions. I"m thinking I'll talk w/ a friend here who has Celiac and a friend of my mom's who's an amazing dr, then probably go ahead w/ the test. I"m ok w/ doing the diet. not worried about eating really, more apprehensive about all the things like cleaning the counters properly, having 2 butter tubs...etc.

My husband is just learly of any medical advice, (his mom had CFS for 18 years and no medical advice helped.)soo...any tips on getting us on the same page, or stories of how you made your decision while considering your loved ones opionions, thoughts, beliefs, would be great.

I"m so sorry for all of you who have the nasty celiac symptoms! although I sometimes wish I had them so this decision wouldn't be so tough.

[Rikki Tikki]

Mary Lynne:

I think you have to stop and think that you are 27, and at that age many of us thought nothing bad would ever happen to us. I have to agree with Rachel in that it is a gift to know that you can stop many years of possible misery by going gluten free now.

I would just hate for you to wake up in 20 years and find yourself sorry that you didn't go gluten free and prevent many possible diseases.

For me I was so sick for so many years that even though I embraced the gluten-free diet it has taken me 3 years to finally put on weight and feel better.

Best of luck to you and whatever decision you make

[mouse]

Welocme to the forum. I agree with all of the other posts. It is your decison as to what your future life will be. At 27, I was healthy. In my 30's intestional problems started and I was told that I had IBS. I was diagnosed with osteoatrthitis, hypothyroid and fribromylagia in my 30s. I started getting what I called mini flu's in my 40s'. In my 50's I started having a stumbling problem at times. Several times a year I could not get out of bed and stand on my legs. They would collaspe under me. I had to wait sometimes 30 to 60 minutes before I could stand on my feet and then get out of bed. I was diagnosed with tremors in my 50's. I saw doctor after doctor. I was 62 years old when I finally had the diagnosis of Celiac Disease. It was too late for me. I delibertly post all of the auto-immune diseases that I now have been diagnosed with, as I hope it will help someone young to go on this diet and avoid the quality of life I have. I agree you have been handed a gift and I can only hope that you choose the right path. Good Luck to your Mom and you.

[tarnalberry]

I didn't have particularly nasty symptoms, but I had one inconclusive test, and was less tired and less stomach-achey without gluten. My husband definitely supports me not feeling like I need a four hour nap every afternoon! :-) (Though now he wonders how I can bound down a mountain at the end of a nine-mile hike. :-) ) You know how everyone says "If it hurts, don't do it"? This is kinda the other side of that coin, "If it makes you feel healthier, do it!"

[eKatherine]

My husband is just learly of any medical advice, (his mom had CFS for 18 years and no medical advice helped.

CFS is one of those "symptom" diagnoses, like IBS. It doesn't say anything about what the person has, just that the doctor gave up looking after running all the obvious tests. A lot of people with chronic fatigue syndrome find it goes away completely on a gluten-free diet.

[Rikki Tikki]

Armetta

Your post mede me feel a bit sad. I sometimes wonder why doctors doctor's won't listen to

us when we say something is wrong and they come back with depression or such. I am so sorry all of your other problems didn't go away going gluten free. It is kind of you to put the diagnosis you do have and hopefully it will make even one person take it serious enough and follow through on the diet and save themselves years of nasty health issues.

I just wanted you to know your story touched me.

Sally

[aprilh]

Hi. New user here. my mom was diagnosed with Celiac about 6 weeks ago. Her dr suggested I be tested (I'm 27) since it is hereditary. My Bloodwork came back very positive and the GI highly suggested that I have the biopsy (scheduled for July 11th) and if it's also positive to go on the diet. BUT...i don't really have any symptoms. The dr was very insistent with my mom that celiacs is highly related to cancer and diabetes, and other things, but when I met him, he couldn't convince me of it. He said they are related, but studies haven't been done to see how likely. And he said to me that the villi replace themselves every 2 weeks, therefore no permanent damage can be made by continuing to eat gluten, but he gave my mom the opposite impression. I'm very confused. Should I even have the test? And If I do and it is positive, why should I eat that diet if i don't have any symptoms and it can't cause permanent damage? The only symptoms I can think that I may have is frequent bowel movements (frequent meaning about once a day) and once in awhile I get severe stomach aches, and I often just feel kind of in a dream world. (I read another post where someone described it as a fog) but none of these are severe. I think if I had the horrid diarreah that many people have or even the anemia that my mom has, I'd be happy to do the diet....but I don't....HELP!!! advice???