Importance Of A Diagnosis

[Curlyqueen]

I was wondering, if eating gluten free is the only solution for celiac disease, gluten sensitivity and or intolerance; then is there any significance or necessity to have it medically determined that one has celiac disease( or gluten sensitivity/intolerance)? If eating gluten free makes you feel better do you need to have a blood test tell you that you should eat gluten free? I'm just wondering what others think. I'm currently waiting a tTG blood test which may or may not give me the answer I'm looking for.

[jswog]

I was wondering, if eating gluten free is the only solution for celiac disease, gluten sensitivity and or intolerance; then is there any significance or necessity to have it medically determined that one has celiac disease( or gluten sensitivity/intolerance)? If eating gluten free makes you feel better do you need to have a blood test tell you that you should eat gluten free? I'm just wondering what others think. I'm currently waiting a tTG blood test which may or may not give me the answer I'm looking for.

IMHO, this is a very personal thing, to want a diagnosis or not care. I'm really torn right now about it. I had an EGD/Colonoscopy during which the doctor (and I use that term ONLY because he apparently graduated from med school and managed to pass licensing exams) was SUPPOSED to have taken biopsies. He decided that he didn't need to take ANY biopsies because 'he didn't SEE any damage.' By the time I had my follow-up appointment (with his nurse practitoner) and found this out, I was already a full two weeks gluten free (and obsessively gluten free) so even the blood tests she offered to do would have been worthless so I declined them. I also have what I firmly believe to be DH and went to a derm for a biopsy on that, but he apparently does not know a thing about how to do the biopsy properly as he took it a full 6" away from the area where it should have been taken. So here I am left with no diagnosis, but very obviously doing better (feeling about 10 years younger) on a gluten free diet.

So now I'm left to the same question you just posed. And I don't really know. The biggest reason I feel I need a diagnosis is that my husband and I are trying to conceive and I would like to have in black and white for an OB to take the condition seriously. I want to make sure that they don't make any wrong recommendations or fail to make the right recommendations to keep me and the baby healthy. If it weren't for that, I think I would probably be ok to just live with no diagnosis.

Jen

[Curlyqueen]

IMHO, this is a very personal thing, to want a diagnosis or not care. I'm really torn right now about it. I had an EGD/Colonoscopy during which the doctor (and I use that term ONLY because he apparently graduated from med school and managed to pass licensing exams) was SUPPOSED to have taken biopsies. He decided that he didn't need to take ANY biopsies because 'he didn't SEE any damage.' By the time I had my follow-up appointment (with his nurse practitoner) and found this out, I was already a full two weeks gluten free (and obsessively gluten free) so even the blood tests she offered to do would have been worthless so I declined them. I also have what I firmly believe to be DH and went to a derm for a biopsy on that, but he apparently does not know a thing about how to do the biopsy properly as he took it a full 6" away from the area where it should have been taken. So here I am left with no diagnosis, but very obviously doing better (feeling about 10 years younger) on a gluten free diet.

So now I'm left to the same question you just posed. And I don't really know. The biggest reason I feel I need a diagnosis is that my husband and I are trying to conceive and I would like to have in black and white for an OB to take the condition seriously. I want to make sure that they don't make any wrong recommendations or fail to make the right recommendations to keep me and the baby healthy. If it weren't for that, I think I would probably be ok to just live with no diagnosis.

Jen

Thank you for your response. It feels good to hear from other people and get other thoughts. As you said the importance of a diagnosis is a personal choice. I've been anxiously awaiting my blood test. I'm nervous that I might get a false negative and I'm not sure I'm ready to challenge that because I get the impression from my (new) doctor that she would not support or suggest going forward. After hearing your story I know that it very possible that I could do the various test and end up with a negative diagnosis and still feel crappy. It would be nice to have a diagnosis because I think it would force everyone to take it more seriously including myself. But I think my family would not be happy if I do these various test and none of them say that I have celiac.

I wish you the best of luck on starting a family. Maybe an OB would be able to do a genetic test to see if you have it? But then I think you would have had to inherited? I don't know I might have my facts mixed up but It might be nice to get a perspective from a different kind of doctor who might know of a doctor who specializes in celiac. Are you currently eating gluten free?

[mushroom]

There are many of us on the board who are self-diagnosed, either because no one thought to test us, or who had (sometimes false) negative results, whose biopsies were done incorrectly or not enough samples, the list is quite endless. If you are comfortable with your own diagnosis and eating gluten free, and fending off friends and family, then there is no actual need for a diagnosis. Sometimes it is a handy weapon for the doubting Thomases, for authorities of various types (schools, hospitals, etc.) but it is a weapon that can also be used against you as someone else mentioned, when it comes to life and health insurance, even though there is no evidence that a gluten free celiac with no other autoimmune conditions has any shorter life span than a non-celiac. I think you should be able to handle things with your OB without a formal diagnosis because he wants to see a healthy baby too.

[jswog]

Thank you for your response. It feels good to hear from other people and get other thoughts. As you said the importance of a diagnosis is a personal choice. I've been anxiously awaiting my blood test. I'm nervous that I might get a false negative and I'm not sure I'm ready to challenge that because I get the impression from my (new) doctor that she would not support or suggest going forward. After hearing your story I know that it very possible that I could do the various test and end up with a negative diagnosis and still feel crappy. It would be nice to have a diagnosis because I think it would force everyone to take it more seriously including myself. But I think my family would not be happy if I do these various test and none of them say that I have celiac.

I wish you the best of luck on starting a family. Maybe an OB would be able to do a genetic test to see if you have it? But then I think you would have had to inherited? I don't know I might have my facts mixed up but It might be nice to get a perspective from a different kind of doctor who might know of a doctor who specializes in celiac. Are you currently eating gluten free?

I also feel that a 'real' diagnosis would make people take things more seriously, especially my work. As a matter of fact (and you can read the full story in my recent post about my Bad Day from yesterday), I cannot even go back to work until I get a doctor's note saying that my 'rash' (that I believe to be DH) is not contageous. Grrr...

From the research I've done, the genetic testing isn't worth putting the money into it. There are too many people who have the identified genes who never develop Celiac Disease and also too many with positive blood/biopsy who do not have the identified genes for me to put much stock into it. My OBGYN is actually the first doctor who has taken me seriously at all when it comes to this disease. She's willing to order testing so long as I can spoon feed her with what needs to be done, since this is not her specialty and she's not familiar with it. She's even given me a referral to a nutritionist (with whom I just got off the phone) to try to get me in the best shape I can with TTC. I'm also 35 years old TTC for the first time, so I have several added complications with it.

I am currently gluten free. I had my EGD/Colonoscopy on Sept 15. The last time I (intentionally) consumed gluten was Sept 13. Sept 14 I had my fun 'cleanout' for the procedure and I used that to kind of 'jumpstart' my going gluten free. And I have not looked back. I feel at least 10 years younger except the three times I think I got a little CC'd (the first eating out at Texas Roadhouse, the second from popcorn at the movies, and the third last night that I'm still trying to figure out). Not too bad for almost 7 weeks gluten free, huh? My husband has been EXTREMELY supportive and we've been fanatical about keeping gluten out of my mouth! I've even gone to using baking soda instead of shampoo and ACV instead of conditioner. I'm still trying to get information on the makeup I use to know if it is gluten-free or not, but beyond that all of my bath/body products are completely gluten-free.

I wish you the best in your decision to pursue a diagnosis or not!

Jen

[Monael]

I agree that it is a personal decision. Through accidental experimentation with my diet, I found that not eating gluten alleviated my chronic diarrhea and bloating, gas and extremely itchy scalp. I searched the internet and found that I might have celiac disease. Since I went gluten free before discovering that I had to be eating gluten in order to get positive test results, I decided that I didn't need the diagnosis because the results were so obvious. I mean I literally used to run to the bathroom! And I haven't had that problem since I went gluten free (except for a few missteps because I was not knowledgeable about just how pervasive gluten is). Even though I would love to eat a pizza, I dread the results so bad that I don't seriously contemplate it. SO far it hasn't affected anything at work, but every job is different so it depends on your situation. Any time they have served food or snacks, I have just politely declined. I haven't really wanted to share my problems so I haven't explained. I just don't eat the donut or cookie. But it really does depend on the job.

[Thera]

I have been self diagnosed for almost a year. Before going gluten-free I had chronic anemia as well as other vitamin deficiencies. Along with the usual GI issues I also had Hashimotos Thyroiditis and Psoriasis, arthritis, chronic dry eye,dry mouth and mouth/lip sores. I have felt great on the gluten-free diet but recently meet my large medical deductible and decided to go ahead and get tested. I have been on a gluten diet for a little over a week and I'm starting to get the GI issues as well as some joint pain and very dry skin. I am questioning my decision and wonder if this is actually causing damage to my GI tract. My husband is very supportive, he is also a physician in another field, and feels the testing is unnecessary and doesn't want to watch me go through the pain of being on gluten for the next month. I'm guessing I would be more diligent with my diet if I had a positive medical test to tell me to stay away from gluten. But from what I have read about the testing process, it seems more like beating my head against the wall to find out if it stops hurting when I stop.

[Celtic Queen]

I'm still pretty new to this gluten free stuff so I'm currently reading everything I can get my hands on about it. One common theme I'm seeing is how unreliable all the testing is. The blood test can have false negative. I keep reading that the biopsy is the "gold standard" for being diagnosed, yet I read that a lot of times physicians don't get enough samples or don't get them from the right place, so it's not that accurate either. To me the "gold standard" should be the diet. If you are on a truly gluten free diet (to the best of your ability to be) and feel better, that's the answer.

[Curlyqueen]

I have been self diagnosed for almost a year. Before going gluten-free I had chronic anemia as well as other vitamin deficiencies. Along with the usual GI issues I also had Hashimotos Thyroiditis and Psoriasis, arthritis, chronic dry eye,dry mouth and mouth/lip sores. I have felt great on the gluten-free diet but recently meet my large medical deductible and decided to go ahead and get tested. I have been on a gluten diet for a little over a week and I'm starting to get the GI issues as well as some joint pain and very dry skin. I am questioning my decision and wonder if this is actually causing damage to my GI tract. My husband is very supportive, he is also a physician in another field, and feels the testing is unnecessary and doesn't want to watch me go through the pain of being on gluten for the next month. I'm guessing I would be more diligent with my diet if I had a positive medical test to tell me to stay away from gluten. But from what I have read about the testing process, it seems more like beating my head against the wall to find out if it stops hurting when I stop.

Thanks for your response. I think accuracy is the biggest reason why I'm questioning the value of a "real" diagnosis. I think I've already convinced myself that gluten is the root of all my medical issues so regardless of what anyone tells me. Like you said the true test is the gluten free diet and I think thats what I'm going to do because I don't want to go through the testing process to be told in the end I need to stop eating gluten or that nothing is wrong with me. Your post and all the other post have really helped me to put this into some perspective. I think at this moment in my life I probably could get by with out a "real" diagnosis. It would be nice to have one so that my family and friends could take me more seriously.

So I guess my next step starting immediately is to eliminate gluten from my diet. As easy as that sounds I know it will not be easy and I don't even know where to begin. Not only would it be mentally exhausting I don't have the money to replace everything I eat with gluten free foods.( if anyone has any advice on how to get started eating gluten free please share). It seems that a gluten free diet is the only way I'm going to get the answer I need. How long did it take you to see a change in your health after you started eating gluten-free?

[Thera]

Thanks for your response. I think accuracy is the biggest reason why I'm questioning the value of a "real" diagnosis. I think I've already convinced myself that gluten is the root of all my medical issues so regardless of what anyone tells me. Like you said the true test is the gluten free diet and I think thats what I'm going to do because I don't want to go through the testing process to be told in the end I need to stop eating gluten or that nothing is wrong with me. Your post and all the other post have really helped me to put this into some perspective. I think at this moment in my life I probably could get by with out a "real" diagnosis. It would be nice to have one so that my family and friends could take me more seriously.

So I guess my next step starting immediately is to eliminate gluten from my diet. As easy as that sounds I know it will not be easy and I don't even know where to begin. Not only would it be mentally exhausting I don't have the money to replace everything I eat with gluten free foods.( if anyone has any advice on how to get started eating gluten free please share). It seems that a gluten free diet is the only way I'm going to get the answer I need. How long did it take you to see a change in your health after you started eating gluten-free?

I think I will give up my gluten challenge as well, since I have my answer and testing will not change the outcome. Going gluten free sounds much harder in the beginning. I found that if I only eat non processed foods I have much less chance of getting gluten. The hard part is in sauces, condiments and soups. The key is to check labels for everything. Going out to eat is also a challenge but I have found that a lot of restaurants will have a gluten-free menu if you ask. I have eggs for breakfast, salad for lunch and a lean meat and vegetable for dinner. I also use my rice cooker for rice and quinoa and have an occasional baked potato for lunch. I am the cook in the family so I have control over what is served but it is also more difficult to make large servings with specialized gluten-free foods(pasta,bread etc.)so I tend to stay away from them altogether. They are also very expensive and not feasible for a family of 5. I don't know your home situation but it can be cheaper to eat gluten-free if you avoid the "special" foods and just eat whole foods and cook them yourself. Besides you will feel much better and have more energy to cook.

[Curlyqueen]

I think I will give up my gluten challenge as well, since I have my answer and testing will not change the outcome. Going gluten free sounds much harder in the beginning. I found that if I only eat non processed foods I have much less chance of getting gluten. The hard part is in sauces, condiments and soups. The key is to check labels for everything. Going out to eat is also a challenge but I have found that a lot of restaurants will have a gluten-free menu if you ask. I have eggs for breakfast, salad for lunch and a lean meat and vegetable for dinner. I also use my rice cooker for rice and quinoa and have an occasional baked potato for lunch. I am the cook in the family so I have control over what is served but it is also more difficult to make large servings with specialized gluten-free foods(pasta,bread etc.)so I tend to stay away from them altogether. They are also very expensive and not feasible for a family of 5. I don't know your home situation but it can be cheaper to eat gluten-free if you avoid the "special" foods and just eat whole foods and cook them yourself. Besides you will feel much better and have more energy to cook.

I'm glad that we were able to kind of help each other. I found all the post here very helpful and I'm thankful for all of the support I've gotten here. I live on my own so I have control over the food but I'm not very good at planning on cooking. I find I eat out a lot because I forget to thaw something or wait too late to start cooking. But I will definitely try to eat/buy less processed foods and more whole foods. Thanks again!