How Important Is It To Find A Doctor And How Do I Find A Good One?

[Cath4k]

I'll try to keep this as short as possible. We suspect all four of our dc (and now ourselves) of gluten intolerance. We tested our oldest dd with the complete gluten panel w/casein from Enterolab and our other three dc with just the gluten and casein tests. So far two of the tests have come in - the one for our oldest dd and one for our 4 yo ds. The test results show that they are both gulten intolerant and casein intolerant. The oldest dd had the gene test as part of the panel and she has a celiac gene AND a gluten sensitive gene. My oldest dd also has lesions that seem similar to DH and will be seeing a dermatologist in early November for that.

My question is: how important is it to get involved with a doctor and try to get an "official" diagnosis. I know for all practical purposes in daily life, the "cure" is gluten-free, so you don't need a doctor to tell you to eat gluten-free. But what else can or should a doctor be doing for a gluten intolerant patient? My dd did show up as having mild malabsorption problems. What type of help can a doctor provide that might be beneficial?

I wonder about the future. Will pediatricians, dentists, hospitals, teachers (we homeschool, but in other environments) take us serious if we just say our dc are "gluten intolerant"? Will they take the issue more serious if a doctor has officially diagnosed celiac disease or gluten intolerance?

If it would be best to have an official diagnosis, have any of you found a doctor who accepts Enterolab results? Three of my dc have been gluten free for awhile. They recently got cross contaminated and it hasn't been been pretty to say the least. I absolutely do not want to gluten challenge them (particularly the little ones who are 4 yo and 2 yo). My oldest would gluten challenge herself if absolutely necessary, but she will be utterly miserable (as evidenced by her regular symptoms and recent CC.)

I actually cried the other day when I realized that gluten intolerance could have been behind the incredibly difficult pregnancies I endured. I had hyperemesis gravidarum in all of them. To think that might have been preventable made me so sad...so very sad...

Anyway...doctor advice anyone? Anyone have advice for finding a doctor who might consider our Enterolab results as good as a standard blood test?

Thanks,

Cathy

[Centa]

Hi, Cathy

All of your questions are serious ones. Some pediatricians, dentists, hospitals and teachers likely will not be convinced without a doctor's formal diagnosis, but it's my experience that professionals like these often do trust the person to report her medical condition, and take it from there.

My dentist, for example, has never doublechecked whether I'm allergic to anything, or asked me to prove the medical profile I gave him.

I suspect that where the rubber will hit the road is over insurance benefits or benefits supported by taxes that are administered through something like a school program. Insurance companies do require a physician's diagnosis before they pay for treatment, and don't pay for specialist visits unless a physician recommends visiting a specialist.

As for doctors and Enterolab results, I'd suggest you do a discussion board search for "Enterolab" and read some of the posts. The search function is on the front page of these discussions, top right. I've not had an Enterolab done.

You might search "gastroenterologist" and read some stories.

Welcome to the site

[HouseKat]

My question is: how important is it to get involved with a doctor and try to get an "official" diagnosis. I know for all practical purposes in daily life, the "cure" is gluten-free, so you don't need a doctor to tell you to eat gluten-free. But what else can or should a doctor be doing for a gluten intolerant patient? My dd did show up as having mild malabsorption problems. What type of help can a doctor provide that might be beneficial?

I wonder about the future. Will pediatricians, dentists, hospitals, teachers (we homeschool, but in other environments) take us serious if we just say our dc are "gluten intolerant"? Will they take the issue more serious if a doctor has officially diagnosed celiac disease or gluten intolerance?

If it would be best to have an official diagnosis, have any of you found a doctor who accepts Enterolab results? Three of my dc have been gluten free for awhile. They recently got cross contaminated and it hasn't been been pretty to say the least. I absolutely do not want to gluten challenge them (particularly the little ones who are 4 yo and 2 yo). My oldest would gluten challenge herself if absolutely necessary, but she will be utterly miserable (as evidenced by her regular symptoms and recent CC.)

Cathy,

From what I've read here and elsewhere, getting the official diagnosis can be a double-edged sword. If you and your kids are officially diagnosed, in the future it will be considered a pre-existing condition and can cause you problems with future medical insurance. If your kids do not get an official diagnosis, it may be difficult - if not impossible - to get schools, etc. to comply with their dietary requirements. Since you're currently homeschooling you don't have to worry about that, but if you ever decide to stop homeschooling...

I think the best of both worlds would be a doctor who believes that you and the kids have Celiac even without positive blood tests or biopsies and is willing to write letters/notes to help you get what your kids need, e.g. gluten-free lunches at school, etc.

Kate

[Offthegrid]

I don't know if you are aware, but you can use a health flexible savings account to pay for the cost of gluten- and casein-free foods above the cost of regular foods, provided they are to treat a medical condition. I plan to do this next year, but it is a bit of a paperwork nightmare. Considering my grocery costs about doubled, though, it will be nice to get some of that back.

You do need a doctor's note of medical necessity, however.

Here's another downside. Also I am looking to get life insurance outside work for the first time because I am getting married and we are about to buy a house. My life insurance premium is about 40% higher than if I was not gluten intolerant. (I don't know if I'd even have to technically report that, but I'd rather not have them deny it down the road on a technicality like that.) I am not considered celiac, however. I chose not to gluten challenge and do an endoscopy.

[tarnalberry]

My doctors have entirely been respectful of my decision to remain gluten free despite inconclusive test results. Only two ever questioned it at all, and while one of those did seem skeptical, he was respectful that I had made my decision when I gave him the solid basis on which I had made my decision. Do they all agree or think it's the best course of action? I don't know and I don't care. It doesn't matter, because it's not their decision, as long as they're happy that I'm eating a healthy diet.

As for how to find a good one: ask friends, ask family, try them out. The first two in particular - ask lots and lots of people for their opinions and ask questions about that - why do you like the doctor? what do you like? what don't you? etc.

[JNBunnie1]

I don't know if you are aware, but you can use a health flexible savings account to pay for the cost of gluten- and casein-free foods above the cost of regular foods, provided they are to treat a medical condition. I plan to do this next year, but it is a bit of a paperwork nightmare. Considering my grocery costs about doubled, though, it will be nice to get some of that back.

You do need a doctor's note of medical necessity, however.

Here's another downside. Also I am looking to get life insurance outside work for the first time because I am getting married and we are about to buy a house. My life insurance premium is about 40% higher than if I was not gluten intolerant. (I don't know if I'd even have to technically report that, but I'd rather not have them deny it down the road on a technicality like that.) I am not considered celiac, however. I chose not to gluten challenge and do an endoscopy.

As far as I know, it is impossible for a health or life insurance provider to hold any illness or pre-existing condition against you unless they have an official medical diagnosis of SOME kind. I may be wrong about that, I hope someone can chime in.

Sounds like you've found the solution to your children's problems, I personally would never ever let anyone near my children with gluten again for any reason. Your children are clearly THRIVING on this diet, it doesn't seem there is any reason for concern over their continuing health.

[Centa]

As far as I know, it is impossible for a health or life insurance provider to hold any illness or pre-existing condition against you unless they have an official medical diagnosis of SOME kind. I may be wrong about that, I hope someone can chime in.

I'll chime. I don't know the specs of legal regulation of the insurance industry, but from having to negotiate for life insurance for both myself and my husband, comparing what life insurance companies would insure, and what the premiums would be, both of us being past the age of 40, they do look over your medical history with a fine tooth comb and even send their own medical practitioner out to test you (or at least this happened to us, with the company on which we settled). He had a couple medically diagnosed preexisting conditions and at that point I didn't. His premium was quite a bit higher than mine was.

I'd encourage peering at the fine print of health insurance policies. They'll differ. We're in a renewal period right now at work, in which we decide which plan we want to pay our part for, on a month by month basis, so I've been looking at next year's cost of premiums (guess which way they're going) and what the premiums will buy.

Here's the fine print of my next year's Blue Cross Blue Shield group policy, regarding preexisting conditions:

Preexisting Condition Exclusion Rules

This plan imposes a preexisting condition exclusion. That means that if you have a medical condition before coming to our plan, you might have to wait a certain period of time before the plan will provide coverage for that condition. This exclusion applies only to conditions for which medical advice, diagnosis, care, or treatment was recommended or received within the 6-month period prior. Generally, this 6-month period ends the day before your coverage becomes effective.

I've seen waiting periods of 12 months, as well...

[hathor]

Well, Dr. Fine of Enterolab is a doctor. Why isn't his diagnosis an official one?

Yes, other doctors may disagree with him (or not). But doctors are not unknown to disagree with one another.

Whatever happened to, "Doctor, it hurts when I do this? ... Well, then, don't do that." If there is some doctor who won't accept the Enterolab results and your experience with glutened and gluten-free diets, then find someone else. Or say you disagree and leave it at that. You are the customer, remember. You don't have to convince them of anything unless you want something from them. My kids' pediatrician each year would carry on about our vegan diet and the need for this and that. But she didn't know as much about nutrition as I do and I would just nod my head and ignore her. Even if they tell you something HAS to be done, you don't have to do it.

I would think that if you ever need something official, Enterolab could provide that. I can't imagine some school or whatever getting that documentation and going ahead and feeding a child gluten anyway. If some bureaucrat is difficult, just go over his/her head and get the supervisor or the legal staff involved. That should take care of the problem. Besides, I really don't think they want a sick child on their hands.

[Tanya Teddy]

This is my first time on this site and am very pleased with the amount of information I have received. I have a 13 year old girl with severe autism. She has had severe regurgitation problems for 2 years. She does this for 2-3 hours after every meal. I am so frustrated with all of her physicians. I have been trying for years to get just one of them either her primary, gastro specialist, neutritionist anybody to aknowledge that she may benefit from the gluten free diet just to try it even. They have all closed the book on it without any regard to the fact that my daughter is losing her hair, her teeth are being severely damaged, and she is very lethargic. I did take her recently to an allergy doctor and she did have a positive result for milk and egg allergies. I am so frustrated!! They keep saying well just see what happens. That i so hard for a mother to hear Any Information from anybody would be greatly appreciated.

[Centa]

Hello, Tanya Teddy

Welcome to the site!

What a difficult situation with your daughter. Of course you want to try everything that can help. The good thing about a gluten-free diet is that it's something that you do yourself, not something a doctor or hospital or clinic does for you.

This means that you don't need a doctor to OK it. Your doctor doesn't write a prescription for it.

You will find that many people posting on this board went the route of a formal diagnosis by a doctor, with blood tests and an intestinal biopsy, or just the blood tests, under a physician's care; but many did not. They discovered by their own observation and reading what they needed, and started eating gluten free without a diagnosis from a doctor. I'm one of those people. My doctor became convinced I had celiac disease because my health improved so dramatically on a gluten free diet; so if you like, the diet itself and its effects convinced the doctor.

Obviously improved health, after you begin the gluten free diet is the final ~medical~ proof that a person's GI can't tolerate gluten, so what do you have to lose?

Response to the diet and recuperation varies from person to person. It takes longer and sometimes has more ups and downs, before the system really begins to heal for some people.

Since your daughter has a difficult time with digestion already, I'd encourage you to read some about the ups and downs some people have had in those first weeks of being gluten free. Everyone's different; your daughter may not have those symptoms at all...it may be smooth sailing. But you'll want to have an idea of what you and your daughter might be going through. Go ahead and ask what the safest diet is to start a gluten free diet, one with less likelihood of upset, and how to add in food items. People are so helpful on this site.

Here's a word-search for "autism" using the search function at the top, righthand side of the first page of the forum. It will get you to posts in which people were discussing autism and gluten intolerance.

Open Original Shared Link

So glad you're here. What about starting a free standing "hello" post in some place like 'Pre diagnosis testing and symptoms" or "Coping," introducing yourself and your daughter, and asking some questions? I'm sure people would respond.

All best,

Centa