Legitimacy Of Stool Tests

[elye]

I am wondering if anyone else has ever had the problem my family is facing right now. Since my celiac diagnosis three years ago, I have long suspected my dad, as well, has a problem with gluten; he's had the classic symptoms through most of my lifetime. He was recently diagnosed with Parkinson's, and I, of course, keep wondering how many of the symptoms (shakiness, ataxia, balance problems) are really from undiagnosed celiac. Last year he had a negative blood panel result. We all know here what that means (nothing).

I have ordered the kit from Enterolab, figuring this will tell us for sure. The reason he cannot just try the diet is because he and my mother are in a retirement residence where they get their three meals and snacks a day, and in order for the kitchen to provide a gluten-free diet they require "documented medical proof" of intolerance or celiac. This would come from their GP, who has poo-pooed Enterolab and says that "gluten sensitivity" is too vague a term, that there is no such thing, blah blah. I feel pretty helpless. I would love to cook all their meals and take them over, but of course this is just not doable. I have heard elsewhere of people having trouble getting stool test results taken seriously. Anyone else faced this problem, and if so, how did you deal with it?

[jerseyangel]

Emily,

I didn't realize that your dad had symptoms. I don't have any first-hand experience with the stool testing, but I have read on here of several people who's doctors accepted the Enterolab results. Hopefully a few of them will see this and weigh in with their experience.

I feel for him that he can't just try the diet and go gluten-free if it helps. It would be so much easier for him. I'll think good thoughts that something can be worked out if the Enterolab comes back positive. I think it's a good idea, though--at least there will be something in writing to support your arguement.

[AliB]

Oh Emily, it's like banging your head against a brick wall, isn't it! Nobody takes Gluten Intolerance seriously unless it is bad enough that it presents as Celiac!

My take on it is this. Celiac disease is a genetic vulnerability. If you have the genetic markers, then you will develop Celiac at some point.

However, some people are diagnosed with Celiac through biopsy even though their blood tests have come back normal. What that is telling me is that they are not Celiac. What the biopsy is showing is where Gluten Intolerance has damaged the gut to such an extent, the damage is identical to that of person with Celiac disease.

Celiac is just an extension of gluten intolerance, just as diabetes is, or Rheumatoid Arthritis, or Fibromyalgia. You name it, gluten intolerance is undoubtedly probably behind it! I just wish the Medical Profession would get their finger out and wake up to the damage that is being done by gluten consumption. If they put all their patients on to a gluten-free diet, the waiting rooms would be at least half-empty, and the rest would only be there because their damage has gone too far!

Arrrrrgh! I could scream. I really feel for you. Why people have to be put through hell and back just to get a diagnosis is beyond me! It is not our fault that a proper non-invasive diagnostic test has not been invented, but even if it had been, they would still only be picking up Celiac and would be completely missing all the damage, even low-level, caused by GI. Any microscopic damage caused to the gut will impact on the body's ability to absorb nutrients. If it can't get the nutrients it needs it cannot function properly. If it cannot function properly we become ill. Simple as that. Nobody is looking for deficiencies.

They don't know what is causing a lot of diseases. They just put them under a 'blanket' term of 'auto-immune' disease. The body is eating itself because it is not getting what it needs from the digestive process! Can you find a doctor who has a bit more understanding?

I hope you manage to get this sorted. I now know that both my Mum and Dad died because of Gluten Intolerance so I can really understand what you must be going through.

[Darn210]

Emily,

I saw where someone was having a similar problem . . . may have been a school needing the doctor's diagnosis, not sure. Anyway, they were going to check to see if the doc at Enterolab would provide the required documentation/letter. Never heard how it worked out.

[moonlitemama]

Emily,

I saw where someone was having a similar problem . . . may have been a school needing the doctor's diagnosis, not sure. Anyway, they were going to check to see if the doc at Enterolab would provide the required documentation/letter. Never heard how it worked out.

Oops, that was me, needing documentation for my son's school, but I haven't followed through yet, so nothing to report. I'll post if I do find something out that may help though.

[gfpaperdoll]

I would email Dr Fine to see if he would write you a script for a gluten-free diet. Also can you get them another doctor?

retirement homes are the absolute worse, when it comes to food. I talked to a lady that worked at a retirement home , she was at a celiac meeting as support for a friend & after talking to her she was going to get tested. She said "hmmmm, I wonder if that is what the people have that have to run to the bathroom after every meal."

Do your parents have a little apartment with one of those tiny little kitchens? Can you cook & freeze meals for them to microwave? I would use glass pie plates to freeze in or those glass pyrex bowls with plastic lids. I think microwaving food in plastic is just not safe. I freeze things in those bowls in layers, mashed sweet potatoes, a layer of chopped meat, a layer of rice & on top a layer of green beans, that type of thing.

I am 61 & I find that really I only need one cooked hot meal a day. The other meal I just eat fruit & nuts, a salad, a boiled egg, or a cold piece of meat. I basically just eat twice a day. I eat lunch at 11:00a.m. & then a snack in the afternoon & then something for dinner.