8 replies to this topic

[MIddings]

I tried to respond to someone else's post but it appears to have sent it to the person and not posted it to the board.
I have about a dozen of the symptoms of Celiac plus the complication of severe osteoporosis.
The symptom that finally sent me over the edge was canker sores. I had them repeatedly for four months before I decided maybe a gluten free diet would help. I started the diet on Sat a week ago and the cankers all healed within three days. I stopped having pain/cramping with BM's. I stopped feeling bloated. I have more energy.
Here's my dilemma. Is it imperitive that I go through all the tests to confirm Celiac? If eating this way makes me feel better what is the point?
Then again, if I were hospitalized, would anybody listen to me if I tried to tell them I couldn't eat certain things if it is not documented in my medical record?
What are the benefits to being diagnosed by the medical establishment as opposed to just listening to your body and knowing what you need to stay away from?
Is the diagnosis important so that people don't think you are off your rocker for being so "picky" about your foods? Is it a way to feel validated when people question you?
I am just really confused as to whether I should pursue a diagnosis or not. I am trying to figure out what the benefit vs risk is worth.
I think I will go talk to my doctor about it and get his take on the whole thing. But I would like to hear your thoughts on this.
Even if I did get tested and say the tests actually came back negative, I'd still stay on the diet knowing how much better I feel this way.
Marsha

[plantime]

Talk to your doctor. If your doctor will accept the results of the diet (like mine did), then have your doctor write it in your chart. The drawback to official diagnosis is insurance: if you have to change companies, then the new company cna claim pre-existing condition and not cover you. It lends validation to your diet, and gives closure to those who have been searching for so many years for answers. How important it is to have a diagnosis depends on you, and what you want. You have to be consuming gluten for the blood tests and biopsies, and are still not guaranteed a correct dx. Are you willing to go through that for a couple of months? You just have to talk to your doctor, and decide what is best for you.

[lauradawn]

I personally had the blood work done, which came back strongly positive, and decided not to have any biopsy's done. I felt like, a diet would give me strong enough indication as to if I truly felt better or not. We weighed the pros and cons and decided that there were little pros for us, and cons included invasive procedures, the risk that results could come back negative (which we would likely not trust) costs for the procedures and lab work, and permanet records of Celiac. Sometimes these are not all bad, but it's what we came up with when trying to decide what to do. It is a hard decision. If you would like something but not neccessarily all of it.... you could find someone to do the blood work and see what happens. That takes no time at all, and if you are already established with a Dr you might not have to wait either. Just an idea.

[MIddings]

I decided to write a letter to my doctor. Here it is:


Dear......,

As you will remember, I have been to see you several times over the last couple of months complaining of reoccurring canker sores in my mouth, some of them have been quite large. I have had trouble with this since the 3rd week in December. We tried switching from Vioxx to Celebrex with no results. I tried going without the NSAIDS for at least a week with no results. You gave me Valtrex to try and it never helped either. As a last resort you talked of sending me to a dermatologist.

I have been doing research on my own on the causes of canker sores. When I read about Celiac, I was surprised to find that I have at least 13 of the symptoms they list for this disease as well as severe osteoporosis which is listed as a complication of Celiac. Of the symptoms that are listed for this disease, I have been experiencing the following....

Abdominal pain.... Reoccurring
Abdominal bloating.... Reoccurring
Foul-smelling stool.... all the time
Gas...reoccurring
Iron deficiency.... Recently diagnosed
Fatigue.... most of the time
Joint pain.....comes and goes
Muscle cramps....comes and goes
Canker sores......almost constant since Dec.
Skin rash.....comes and goes....it appears on the back of my neck suddenly....burns and
itches and puffs up like a severe burn and lasts for several days and disappears
Indigestion.....occasional
Constipation......reoccurring
Hypoglycemic episodes......reoccurring
Osteoporosis.....severe

I decided to try the gluten free diet for celiac to see if it would make any difference....mainly to the canker sores since this was the most troublesome symptom to me. The abdominal symptoms I have had for years since I was a child, but I never said anything about it to anyone because I just thought that was normal.

After three days on the gluten free diet the canker sores have all healed and I have not had any new ones show up. As of this writing it has been eight days. Not only have the canker sores stopped, but I no longer have the abdominal pain, bloating and gas and I have more energy than I used too.

I realize there are tests that can be done to confirm Celiac. But I also realize a person needs to be consuming gluten for them to turn out right. I am feeling so much better eating this way that I hate to mess myself up just to be able to confirm the diagnosis of Celiac. However, if you know how to do the blood tests or know that the local labs here will process them, I would be willing to eat gluten foods for a short time and have the blood work done. I really do not want to do the small intestinal biopsy though and my husband is really discouraging me from having it done. He doesn’t want me to go through that.

So I am asking if you would be willing to just write it up in my records there that I have done the Gluten Diet Challenge and have had positive results with the gluten free diet. The reason I would like to have this in my record is in case I ever go to the hospital, they will see that I need a gluten free diet.

Again, if you want me to go through the blood tests so we can have something “scientific” for the record, I would be happy to do what I need to for that. Just let me know. But I do not want to have the biopsy and my husband is against me having it.

I would appreciate a note or phone call letting me know either way, whether you will just add this to my record or want me to come in for blood tests. You may reach me at the contact information listed above.

Thanks for you time and for taking care of me.

Marsha Iddings

I will let you know what I hear back from him.

[plantime]

Looks good! I hope he accepts the diet, since it is a scientific way of measuring something!

[the2ofus]

Hi Marsha,
If you are going to have the blood test done do it with prometheus labs in California. They are supposed to be the most accurate in the country. If you order the test as a comprehensive celiac test they will do a gene test if you other results are negative. Then you would atleast know if it is a possibility. My insurance company approved going there because the local labs do not do the gene test. You can call them and they will send you a postage paid kit to send your blood back to them in. 888-423-5227 www.prometheuslabs.com.

Good luck
Robin

[wildones]

I think your letter to your doctor is great ! It says everything he needs to know to come to the same conclusion that you have. I have seen several time on this board that some people are concerned about being 'officially diagnosed' in case of future hospitalizations. If you are not conscious or aware enough to talk, then you won't be given any foods right ? You would not be force fed any foods against your will right ? If you are well enough to eat, then you are well enough to tell the nurses/doctors about your dietary requirements.
I can't imagine that anyone would require proof of gluten intolerance or celiac disease in order to accomadate your needs. My son has had many hospitalizations, and has a long complicated medical history. He has been to many ERs also, and we have never been required to 'prove' anything about his history.

Hope you continue to feel well and enjoy your gluten-free eating !
Lorraine

[concernedlady]

Dear Marsha,

You can have your (gluten-free) cake & eat it! You could have a non-invasive stool sample test done, for gluten intolerance, and this stool sample testing can be done WHILE you are gluten-free, and it can be done even a month or more after you've been gluten-free.

See Dr. Kenneth Fine's "EnteroLab" website, about his innovative, reliable, non-invasive testing. Dr. Fine is a credentialed gastroenterologist, who himself has a gluten intolerance (as does his daughter). Here'a a link: http://www.finerhealth.com

Many people on this forum here, have had EnteroLab testing, and it usually validated their decision to go gluten-free.

Sincerely,
Carol
http://cantbreathesuspectvcd.com

[plantime]

Wildones, In the event that you are unconscious or unable to communicate for an extended length of time, you WILL be given a "food packet" intravenously. You will not be allowed to starve to death. If no one around you knows that you cannot have certain things, then you will get what you might not be able to have. I do not know how the IV administration would do in regards to the intestinal villi, and I have no desire to find out the hard way!