Frustrated, Confused, And Angry

[lloydke]

I have had a sensitive stomach since my teens and never thought much of it until this year when I started other problems that included but is not limited to bleeding and weight lose. Ever since my initial visit to the Docter about my life has turned up side down. I have been poked, proded, and evaluated so often by so many Docters and technicians I feel like a pin cushion. On one visit 5 weeks ago along with the catalog of other complaints I had I told her about the blisters I had been getting in my mouth and she ordered endoscope to evaluate me for celiac disease. When I contacted the GI I was told the earliest they could schedule the procedure was 4 weeks. I had a bad flare up the following week and decided the heck with it and I started to limit the amount of gluton in my diet and by the time the endoscope was done I was feeling as good as I have for a year. At the conclusion of the endoscope procedure the Dr told my wife that in his professional opinion I did not have celiac disease and that he was going to make "recomendations" to my family practice Dr.; but he did not say what those recomendations were. This was last Thrusday and since that time I have lefted my self imposed dietary restrictions. By Satureday evening I felt ill and I am still sick now. The biopsy results are not yet in, but that doesn't really matter I expect them to be inclusive any way.

I don't mean to rant but nobody seems to understand. Not my wife, family, friends, or Drs. If one more person suggests to me that I am having a mental breakdown and that all these problems arn't real I'm going walk to the hospital and have myself committed (right after I punch the person who suggested it square in the face of course). I 'm tired of being tired. I can not miss any more work and I am sick of being sick.

Keith

[elle's mom]

I think a lot of people here in this forum feel your pain. Most of our family thinks we are either completely nuts or least "going overboard" in some form. Hang in there, try not to worry about what other people think. Know that you are not alone........it will get better as time goes by. Trust your body, it knows what it needs and what it can handle. Your wife should be able to SEE the difference from when you were on the gluten-free diet until now, can't she? We all have good days and bad days, sounds like you just had a bad one.

[dilettantesteph]

I'm not sure if you already know this but...when they check you for celiac disease, they look at your body's response to gluten. If you have already stopped eating gluten, they won't see the response and you will look like you don't have celiac. Did the GI doc know that you had already stopped eating gluten? His advice might have been different.

[Gman]

Couple of things to keep in mind:

1) It's never just gluten, or wheat, or whatever. These things may be important to changing your bodiy's functioning, or may be triggers, but it's never just one thing.

2) Once you discover a real trigger for your body (like gluten in this case) and remove it, then start the whole process of discovery and improvement all over again -- your body will find a new balance based on the new/changed/improved diet and there will be different foods to add or remove to further benefit it.

3) Always keep an open mind, because many people who remove gluten (or whatever food allergen) either experience a series of new allergens to deal with, or find they can slowly return to gluten over time and digest it successfully.

4) I would have more faith in your personal experience than diagnostic medicine. However, your faith will increase greatly if you carefully document all of your food intake and reactions to it over a few months. Then, follow an elimination diet (remove a group of suspect foods for 2-4 weeks, then add them back in one by one over several weeks to look for bad reactions). Done right, this is perfectly good science and will allow your practicioner to more confidently diagnose.

5) Read those labels before you eat -- understand all of the places your gluten etc. can hide and really really pay attention.

6) Even if you turn out to be allergic or sensitive to absolutely nothing (hi, nutcase!), by paying close attention to your diet and your body's resonse to it, your life and well being will improve.

Good luck. twitter.com/aplewis

[no-more-muffins]

I agree with the pp who said that many of us feel your pain. Friends and family and many doctors don't believe us or understand. You have found a great board where there are many, many people who have been in your position and we definitely understand.

And like the pp said, listen to your body. The doctors don't know YOUR body. If you feel better not eating gluten then you should not eat it.

[dream77]

I agree with the pp who said that many of us feel your pain. Friends and family and many doctors don't believe us or understand. You have found a great board where there are many, many people who have been in your position and we definitely understand.

And like the pp said, listen to your body. The doctors don't know YOUR body. If you feel better not eating gluten then you should not eat it.

Just to repeat what everyone else said... You are not alone in feeling your pain.. emotional, physical and social (for lack of a better word and hopefully you get what I mean)

I am ALSO on that path hopefully to a fix..

[ang1e0251]

Endoscopy and blood work aren't the only ways to dx celiac disease. A strong dietary response like you've shown is a big part of the puzzle, one answer that can show your dr what you've learned about your system. celiac disease can be hard to dx and endoscopy isn't always conclusive especially when you were eating gluten-free beforehand. If your dr won't accept your dietary response as a part of a diagnosis then maybe you should change dr's. You need someone who will believe what you tell them as true, as far as your symptoms go and also understands celiac disease fairly well.

You could ask if your dr if he will accept gene testing as tool to dx also. With your dietary response and positive gene testing, your dr might be willing to dx you as gluten intolerant.

Personally, I don't need to be tested to prove what I know; my body can't handle gluten. I won't go back on gluten to prove it. My family is accepting and they know how sick I was and how much better I am now.

[Serversymptoms]

I understand how frustrated, confused and angry you are. As 17 years old many family members, doctors etc... think it's either my imagenation, just want attention etc... I could write so much, a lot, but I really rather not. Though I have been slowly finding out my health problems, and I self diagnosed myself as being celiac, and yeast allergy. I also did the candida spit test and now aware I have candida, and I also suspect there could be a thyroid problem. Including all of these health issues, I think I could be malnutrition due to intestines being damage... I have delt with symptoms that stay or come and go for so long that I adapted to it and thought it was normal, but it's not. I have never a biopsy done, and even my visible symptoms ( such as rash, lump on head etc... ) are being ignored. I mean I'm really rage, and thought all would be sorted out by now. No progress is being made, I've went from counsler, to phycologist, and now being referred to phycriactrist. I'm really raged about my whole situation ( since I first notice I had a health problem in 8th grade, and finally started having appointments in 11th) that I once had a top choice university ( Michigan State University) though now due to my whole situation ( which is really bad) I no longer have a top choice, and as it countinue I don't even think I can apply to Michigan State University no longer ( only ten minutes from my house, within the city of Lansing... where I'm being neglected, and likely tortured with my health). I'm just really trying to get out of this city for good now, it really put/ putting me through a lot of negative mess. I don't need to reside in a city as such. So in all thats where I'm finding some relief, knowing my time in this horrible place is soon done... and can less think about what I experienced.

^

Yeah I know I got off topic, but couldn't help it

[lloydke]

Thanks guys, I just needed to vent. I have Dr appt on friday and the biopsy results should be in by then. It will either confirm celiac disease or it will not and I'll just take it from there.

Keith

[shendler]

I completely understand where you are coming from. Before I was diagnosed my family would say they knew what was wrong with me..I was just nuts . They would say things like, well if the doctor can't find out what's wrong you must be fine. Even now if I eat gluten and I get sick my mom will say it must be that greasy food.

Anyway..I hope you get an answer!

[ranger]

I have had a sensitive stomach since my teens and never thought much of it until this year when I started other problems that included but is not limited to bleeding and weight lose. Ever since my initial visit to the Docter about my life has turned up side down. I have been poked, proded, and evaluated so often by so many Docters and technicians I feel like a pin cushion. On one visit 5 weeks ago along with the catalog of other complaints I had I told her about the blisters I had been getting in my mouth and she ordered endoscope to evaluate me for celiac disease. When I contacted the GI I was told the earliest they could schedule the procedure was 4 weeks. I had a bad flare up the following week and decided the heck with it and I started to limit the amount of gluton in my diet and by the time the endoscope was done I was feeling as good as I have for a year. At the conclusion of the endoscope procedure the Dr told my wife that in his professional opinion I did not have celiac disease and that he was going to make "recomendations" to my family practice Dr.; but he did not say what those recomendations were. This was last Thrusday and since that time I have lefted my self imposed dietary restrictions. By Satureday evening I felt ill and I am still sick now. The biopsy results are not yet in, but that doesn't really matter I expect them to be inclusive any way.

I don't mean to rant but nobody seems to understand. Not my wife, family, friends, or Drs. If one more person suggests to me that I am having a mental breakdown and that all these problems arn't real I'm going walk to the hospital and have myself committed (right after I punch the person who suggested it square in the face of course). I 'm tired of being tired. I can not miss any more work and I am sick of being sick.

Keith

I quit eating gluten(didn't know any better at the time) a month before bloodwork, so didn't test positive for celiac, but I knew that gluten was the problem. I quit eating gluten and have steadily improved since. I don't need a doc ar anyone else to tell me what my body is telling me. My family is supportive now, because they see the improvement. Please try the gluten free diet long enough to see if that's the problem- it looks like it is- and maybe they will come on board. It helps to have them on your side, but you can do it in your own. There's lots of info on this sight. PPPlease take advantage, and good luck to you.

[ranger]

Couple of things to keep in mind:

1) It's never just gluten, or wheat, or whatever. These things may be important to changing your bodiy's functioning, or may be triggers, but it's never just one thing.

2) Once you discover a real trigger for your body (like gluten in this case) and remove it, then start the whole process of discovery and improvement all over again -- your body will find a new balance based on the new/changed/improved diet and there will be different foods to add or remove to further benefit it.

3) Always keep an open mind, because many people who remove gluten (or whatever food allergen) either experience a series of new allergens to deal with, or find they can slowly return to gluten over time and digest it successfully.

4) I would have more faith in your personal experience than diagnostic medicine. However, your faith will increase greatly if you carefully document all of your food intake and reactions to it over a few months. Then, follow an elimination diet (remove a group of suspect foods for 2-4 weeks, then add them back in one by one over several weeks to look for bad reactions). Done right, this is perfectly good science and will allow your practicioner to more confidently diagnose.

5) Read those labels before you eat -- understand all of the places your gluten etc. can hide and really really pay attention.

6) Even if you turn out to be allergic or sensitive to absolutely nothing (hi, nutcase!), by paying close attention to your diet and your body's resonse to it, your life and well being will improve.

Good luck. twitter.com/aplewis

Never heard of a celiac being able to retun to eating gluten.

[karenhockley]

For a disease that affects 1 in 133 people you'd think that there would be more information or at least more support from Doctors and others. We all share what your feeling at this moment, we've all been there and we're here to help you out or just listen when you need to vent. Sometimes a good venting session is all you need.

That said because you went on the gluten free diet before your biopsy you may not get the correct results, tell your doctor when you went on the gluten free diet and let him make the decision. I was told by my doctor that 24 hours into the diet the damage is starting to get repaired and that is why they want gluten in your body.

Good luck at your doctor's appointment I do hope you get your answer soon. Whatever it may be!

[ravenwoodglass]

3) Always keep an open mind, because many people who remove gluten (or whatever food allergen) either experience a series of new allergens to deal with, or find they can slowly return to gluten over time and digest it successfully.

People with celiac disease do not have an allergy to gluten. They have an antibody reaction not a histamine one. Celiac is an autoimmune condition and celiacs can never go back to eating gluten. It can take a bit before gluten has obvious effect after someone has been off it a long time. That is why doctors used to consider it a 'child's' disease and that it could be outgrown. They now know that is not the case. A person who is celiac who goes back on gluten risks multiple organ systems including the brain, at times these other systems can be attacked before gut symptoms get severe enough to be an issue. Celiac is not a digestion issue it is an antibody response.

[lloydke]

As I anticipated the test was negative for celiac. I need some advise. I have decided to start a food jornal to try and isolate the trigger foods for the problems I have been having. I am going to start by going diary free for a couple weeks and then slowly reintroduce diary to see if there any change. I do not know if I should go gluten free at this time. I hate to eliminate so many of my favorite foods unneccesarily but on the other hand it is such a restrictive diet, that should my symptoms disappear completely it would be the best place to start to try to determine the trigger foods quickly. Your opinions would be apreciated.

Keith

[ravenwoodglass]

As I anticipated the test was negative for celiac. I need some advise. I have decided to start a food jornal to try and isolate the trigger foods for the problems I have been having. I am going to start by going diary free for a couple weeks and then slowly reintroduce diary to see if there any change. I do not know if I should go gluten free at this time. I hate to eliminate so many of my favorite foods unneccesarily but on the other hand it is such a restrictive diet, that should my symptoms disappear completely it would be the best place to start to try to determine the trigger foods quickly. Your opinions would be apreciated.

Keith

"I had a bad flare up the following week and decided the heck with it and I started to limit the amount of gluton in my diet and by the time the endoscope was done I was feeling as good as I have for a year."

This is very significant. I do hope you will go back on the diet. The fact that going gluten free made such a difference in the way you feel is the most diagnostic test you can do, IMHO. I would go ahead and drop the dairy also for a bit and then reintroduce it later when you are feeling good. Some of us are able to tolerate dairy again after we heal but until we do the same areas that are damaged by celiac are also the areas that help us digest dairy which can make it a problem.