Confused And Depressed

[angieInCA]

3 weeks ago my Dr. (GP) said that she was about 90% sure I was Gluten Intollerent and suggested I go on the gluten-free diet. So gluten-free I went!

When I got the copy of all my tests that had been ran not one was for finding out if I had celiac disease. I called the Dr. office and asked if she planned on running any of the tests and she said "If the gluten-free diet is working why bother." But then suggested I see a GI for testing so "We can see what the extent of damage there might be and where to go from here". She said I didn't have to start eating Gluten again.

I found a Gastroentrologist in this area that was recommended for celiac disease. Called to make an appointment but I can't get in for 6 weeks. I asked the appointment taker (I know, not the best person to ask) if I should start eating Gluten again and she said if I was getting tested for celiac disease I should not be eating gluten.

So.........After doing much reading (on here and elsewhere) I decided to start eating Gluten again till the Dr. appointment because I want to make sure to give the test the full benefit of a positive exposure. I have been back on Gluten for 2 days and I am soooooooooo sick. Nausea, headache, pain in all my joints, pain on my left side, hips hurt so bad I can hardly walk or sit. I itch from my waist to the top of my head (no rash yet) especially on both of my forearms. Brain fog, extremely tired almost like I have a hangover with out the benefit of the drunk. And of course the dreaded diarrhea. Six times this morning in 3 hours.

I can't imagine going through this for 6 weeks. And that is just for the first consult appt. Am I thinking about this all wrong. Should I really be doing this to my body?

[Lisa]

It's obvious that you have either Celiac Disease, a gluten intolerance or a gluten allergy. The diet is a diagnosis in itself.

Sometimes it does seem like a very dumb thing to do by making yourself sick, do further damage, just so that MAYBE that damage can show up for doctors to be satisfied. Your doctor said that he/she was 90% sure you have Celiac, is the remaining 10% worth feeling sick as a dog?

Angie, my advise would be, that if it makes you that sick, stop. Go back to the gluten free diet and feel better. You already know that you have an issue with Gluten. Listen to your body.

Whatever you choose, I hope you feel better soon.

[Amyleigh0007]

What Momma Goose said is right on. If gluten makes you sick and you feel better not eating it then you have a problem with gluten and you shouldn't eat it. It sounds like you already know the answer to your health problems - gluten free! You could be doing your body more harm then good by eating gluten for the next 6 weeks. Your body is telling you something! Listen to it. Good luck!

[Nancym]

I'm with them, why do this to yourself for a test that a lot of people seem to get false negatives from?

[angieInCA]

Thank you for your responses, you just keep confirming what I feel.

I guess I should explain why I want to give the tests every opportunity to be positive.

I KNOW I have a problem with gluten and will avoid gluten the rest of my life.

But.......I have two children ages 19 and 23 who I believe show some signs of celiac disease but refuse to listen to me. But heck, what do I know, I'm only their Mom and if it took me 47 years to figure this out then they don't have to worry about any damage untill they really have to, Right?

They really are great kids and are very supportive especially after they saw what just 3 weeks off gluten did for me. But when I broach the subject that they should get tested, their response is "well you haven't been tested so you don't know if this is really what is wrong".

So, I guess I'm looking for solid confirmation so I can be a bit more pushy with my adult children.

After all the research I have done, I have no doubt I have suffered with this all my life, It explains so much of the unexplainable. I just wish to hopefully keep my kids from going through the same things.

[ravenwoodglass]

Thank you for your responses, you just keep confirming what I feel.

I guess I should explain why I want to give the tests every opportunity to be positive.

I KNOW I have a problem with gluten and will avoid gluten the rest of my life.

But.......I have two children ages 19 and 23 who I believe show some signs of celiac disease but refuse to listen to me. But heck, what do I know, I'm only their Mom and if it took me 47 years to figure this out then they don't have to worry about any damage untill they really have to, Right?

They really are great kids and are very supportive especially after they saw what just 3 weeks off gluten did for me. But when I broach the subject that they should get tested, their response is "well you haven't been tested so you don't know if this is really what is wrong".

So, I guess I'm looking for solid confirmation so I can be a bit more pushy with my adult children.

After all the research I have done, I have no doubt I have suffered with this all my life, It explains so much of the unexplainable. I just wish to hopefully keep my kids from going through the same things.

First you have a good doctor. If that doctor is 90% sure after you tell him the result of your gluten challenge that will go up to 100%. Dietary exclusion and challenge really are valid forms of diagnosis and it sounds like your doctor knows this. I am willing to bet that he has already noted it in your chart. He may back you up on the need for testing of your young people. But be forwarned sometimes even if they do get diagnosed they may refuse to do the diet anyway. Voice of experience here, unfortunately.

You may also want to consider having Enterolab testing done. They can test even if you have been off gluten for a bit. They do not formally diagnose but they can look for antibodies and they also do gene testing. That may be another route to go.

[ECD]

I'm just beginning the testing process, as well, and the idea of eating gluten again seems daunting. I'm sorry you are having such a difficult time with it!

I was just wondering that if there might actually be some beneficial medical reason for know if it is celiac disease vs. gluten intolerance vs. gluten allergy, like someone mentioned? I know the overall diet would be the same in all cases, but is there a possibility that if it's an allergy you might need an epipen or something? I was just curious if anyone knew?

Thanks!

[mftnchn]

My thought is that you could try to call the GI office again but don't talk to the appointment taker---she had no business answering your question in my opinion. Ask for the nurse. Explain what has happened. Some GI's would diagnose you from just your dietary response. Others will say it is not important. Then ask if you go off gluten and end up with negative testing how they will explain your dietary strong response.

Who knows? You might get some help with this, and if not, you can still do Enterolab, and make your own decision regardless.

I hear you about adult children. Could be though if you really improve and they notice a difference they will eventually give credence.

[bsiyatadshmayah]

I was just wondering that if there might actually be some beneficial medical reason for know if it is celiac disease vs. gluten intolerance vs. gluten allergy, like someone mentioned? I know the overall diet would be the same in all cases, but is there a possibility that if it's an allergy you might need an epipen or something? I was just curious if anyone knew?

Thanks!

From what I've read, wheat allergies could cause potentially life-threatening reactions very quickly, such as an anaphylactic attack. Yet, the symptoms between celiac disease and wheat allergies can also very similar. I know of a little guy who you'd swear has Dermetitis Herpetiformis (a form of celiac disease) by looking at him, and the doctors were sure that was what he had, at first. But his very thorough intestinal pictures (they looked through the entire intestinal tract) were negative, as were his blood tests. His family later found a clinic that specializes in food allergies, and his IgE levels was out of this world. There is only one other patient at that clinic, an adult, with higher IgE levels. It has taken over a year of being gluten free for his skin to improve. His wheat allergies (and other food allergies) were potentially life threatening from the loss of skin coverage alone, as well as from the severe malnutrition, and it was obvious he was malnourished, in spite of having a phenomenal cook for a mother.

Another difference between a wheat allergy and gluten intolerance or celiac disease is that one can grow out of food allergies. One doesn't grow out of celiac disease. Untreated celiac disease can lead to other serious illnesses. So, in my opinion, it is important to get a definitive diagnosis if at all possible. I am currently on that path, and it is very, very inconvenient, uncomfortable and annoying, to say the least.

Thus far, and I am only 10 weeks into the process, I personally advocate pursuing the diagnosis. 'Course, I'm already very tired of eating all this bread and all these noodles. I was pretty much grain free for more than 5 years due to a Candida Albicans overgrowth diagnosis that mysteriously kept returning. I barely consider most bread, crackers and noodles food anyway. So, I'm on a high "gunk" diet in my opinion, and I drool at the sight of a plate of sauted veggies, which I can barely find room for after two slices of bread. Plus, I'm gaining weight and my wardrobe is shrinking. So I'm not a hardliner on this. It really depends on one's circumstances. Mine necessitate a definitive diagnosis if possible. BUT, it may not be possible and that has to be recognized. I think there may be many variables that aren't yet recognized.

[home-based-mom]

Thank you for your responses, you just keep confirming what I feel.

I guess I should explain why I want to give the tests every opportunity to be positive.

I KNOW I have a problem with gluten and will avoid gluten the rest of my life.

But.......I have two children ages 19 and 23 who I believe show some signs of celiac disease but refuse to listen to me. But heck, what do I know, I'm only their Mom and if it took me 47 years to figure this out then they don't have to worry about any damage untill they really have to, Right?

They really are great kids and are very supportive especially after they saw what just 3 weeks off gluten did for me. But when I broach the subject that they should get tested, their response is "well you haven't been tested so you don't know if this is really what is wrong".

So, I guess I'm looking for solid confirmation so I can be a bit more pushy with my adult children.

After all the research I have done, I have no doubt I have suffered with this all my life, It explains so much of the unexplainable. I just wish to hopefully keep my kids from going through the same things.

You might consider having a gene test. Depending on the results you kids might respond to that as they each have half of your genes!

Also print out some of the damage that can happen from long term undiagnosed celiac. They might listen to that, too.