Undiagnosed W A Difficult Dr- Help!

[beccathorn]

Hi! I would love to have a response to my situation. I'm 5 months pg and un-diagnosed. I'm trying to get diagnosed now. I had a blood test that was negaitive because I've been gluten free since last January. The Dr. of course won't do a biopsy until after my pg. Tho I'm not sure I want one anyway, what if my intestines have healed to the point where they can't diagnose. What a pain to go thru for a false/ positive. Does anyone know if Enterolabs does their testing with a Drs orders? My Dr. knows nothing about the DNA test, nor any of the stool tests and seems to think Entero lab is a scam because you don't have to go thru a Dr. to get them done. A huge crime to her, apparently! I'm not getting much help from her she chastised me for self-diagnosing. I'm glad I did or would have been very sick during this pg!

I would love some advice or at least some help in dealing with difficult doctors!

Thanks!

Becca

[beccathorn]

Hi! I would love to have a response to my situation. I'm 5 months pg and un-diagnosed. I'm trying to get diagnosed now. I had a blood test that was negaitive because I've been gluten free since last January. The Dr. of course won't do a biopsy until after my pg. Tho I'm not sure I want one anyway, what if my intestines have healed to the point where they can't diagnose. What a pain to go thru for a false/ positive. Does anyone know if Enterolabs does their testing with a Drs orders? My Dr. knows nothing about the DNA test, nor any of the stool tests and seems to think Entero lab is a scam because you don't have to go thru a Dr. to get them done. A huge crime to her, apparently! I'm not getting much help from her she chastised me for self-diagnosing. I'm glad I did or would have been very sick during this pg!

I would love some advice or at least some help in dealing with difficult doctors!

Thanks!

Becca

[GEF]

It really is important that you have a doctor that is either knowledgable about celiac / gluten intolerance and/or is willing to learn. It's difficult to get a diagnosis even when you're not pregnant and not gluten-free... but, I'm not saying it's impossible. If you're not sure of a doctor to see, you can see if a local support group or a fellow celiac recommends one. There's a test called the rectal challenge, that's pretty new and is safe for the pregnant and for those already on the gluten-free diet... but, I don't know how many doctors know about it. They have to be pretty knowledgeable. There are stool tests, etc... but I'm not sure if you need to be consuming gluten for them to be accurate.

Good luck!

Gretchen

[Alexolua]

Good info by GEF. Gonna throw in my 2 cents. =)

Does anyone know if Enterolabs does their testing with a Drs orders?

They don't with a doctor's order, but the lab does have doctors, if that helps? Basically you order it online, they mail you the tests, then you give a stool sample or DNA sample, then send it back to them. They'll then send you an email with your results. Mine took 4 weeks.

But if you have questions for Doctor Fine at Enterolab, like if you could still test postive, with how long you've been off gluten, you can ask him? I've emailed him twice and had a response the next day, by him.. or someone answering for him, LOL.. but has been helpful.

email@enterolab.com

Don't know if they'd be as quick over a weekend though.

I know how you feel though, my doctor hasn't accepted Enterolab's results, and doesn't seem too knowledgable beyond the basics. Hasn't heard of their testing either. But basically, if you are feeling better on the diet.. do you need any testing? Improving on the diet is a test in itself.

Good luck! =)

[wildones]

Find another doctor. There is no point wasting time with a doctor who will give you a hard time, especially if you are pregnant. You can still get more than adequate nutrition. You could potentially have a much bigger problem if you are consuming gluten when you shouldn't be. If you are malnourished you can not provide adequate nutrition to your baby. I really wish I had been dignosed before my triplet pregnancy. It may have made all the difference in the world for my kids. One of them has had major ongoing chronic problems after he was given formula against my adament requests. I knew our family had problems with tolerating milk (nearly every OTC formula is cow's milk based). My son had a very bad reaction to the formula and lost most of his intestines, was critically ill for a long time and has a huge host of major consequences a s a result. If I had been gluten free and he had received only breastmilk like I had adamently requested then it would have been a different story. All three of my kids (and my husband and I ) have been dignosed with celaic or gluten intolerance and it would have made a world of difference if it had been diagnosed earlier. I went to MANY specialists/accupunturists/alternative medicine specialists, GI drs, allergists, hepatologists before I got pregnant. I also went to an infertility specialist for 7 yrs before I got pregnant.

Everything could have been different if one of the people I went to diagnosed me !!!!!!

There is no harm that can come from a gluten free diet only good !!!!!

[beccathorn]

Hi- thank you all for the information and advice. I just went to see this Dr. again and my magnesium is slightly low- she said this could be from Celiac. I actually asked around about this Dr and she is the best Gastro Dr that we have in town! Scary. I gave her info on Entero Lab and she still believes it to be a scam. She called someone she knows in Pathology to ask if he knew of a Gene or stool test for Celiac and he did not. The pathologist is going to call the Mayo clinic to find out if there are such tests. She told me to come back for a biopsy after the baby is born in late Dec. I asked her if it would show accurate results after a year of gluten-free diet and she said probably not, see you then. ugh.

The reason I want to be officially diagnosed is so they can monitor it. Also, so I know if my children could get it. I also have family members who show signs of it but refuse to take it seriously. I wish they would get the test, because theyre obviously eating gluten and sick, They would probably easily find out and then I would know for sure it's in our family. Tho I already do. I feel 100% better since being on this diet. I wouldn't go back to feeling sick all the time- even for a piece of pizza! Lactose Intol too.

Wildones- I'm so sorry you had such problems w/ getting you and your family diagnosed. How did you ever finally get diagnosed? I feel fortunate to know now at least, even if I'm not officially diagnosed. I also plan on breastfeeding for at least a year and a half, so maybe my baby can avoid it. Thanks for sharing your story.

Also thanks for info on Enterolabs and rectal challenge- I'll do more research on that.

[ideagirl]

She called someone she knows in Pathology to ask if he knew of a Gene or stool test for Celiac and he did not. The pathologist is going to call the Mayo clinic to find out if there are such tests.

I've seen some info on the web about DNA tests for celiac. The disease has a genetic component, so DNA tests can be somewhat useful. The way celiac works is you have the genetic thing that makes it possible for celiac to get triggered in you, and then, if a trigger comes along, you develop celiac disease. Triggers vary pretty widely, but they boil down to serious stress (mono, pregnancy, other experiences that can cause serious physical and mental stress).

Open Original Shared Link

And a quote from the U of Maryland center for celiac research:

"What is the meaning of HLA DQ2/DQ8?

As an autoimmune disease, celiac disease is the consequence of the interplay between genes and the environment (gluten). We don

[mommida]

I was just reading about the genes associated with Celiac. Look back for the professor's post and link. DQ2 and DQ8 are the most widely accepted genes for for a Celiac diagnoses, not the only genes. The absence of those genes does not mean that it can not possibly be Celiac. Entero Lab checks for 2 more genes than Prometheus Labs. ( that should prove the point of other genes involved with Celiac or gluten sensitivity) Genetic testing is still "new" and and not every gene has been isolated that could possibly be involved with Celiac Disease. Depending on the literature you read, you will find opposing statements.

We were tested through the Dr.'s office. When we had questions about the tests results, we had to work through the Dr.'s nurse and the company. The test that we were told was 90some % accurate before testing, was then capable of being 30% false negative or false positive. That was Prometheus Labs and the doctor's answer to our questions.

Our out of poscket costs, after insurance picked up most of the expense was, $700 per test for 3 of us. Yes $2100.

I have read people's test results posted here on the forum from Entero Lab. I would have been very happy to have the test results explained that way. I have nothing in writing.

L

[c2shopping]

Hi. I'm hoping that this might help someone who is trying to get better.

My journey included many misdiagnoses, one un-needed surgery for incontinence, therapy because I was so (to put it simply) messed up, and a lot of self-doubt when dealing with the wrong doctor. Here are the highlights of frustration:

1. I had a negative blood test.

2. I had a negative biopsy.

3. When I had vitamin panels done of my blood, the levels of vitamins in my blood were low. (If your doctor is difficult, and you can't get a new one, try forcing them to do a vitamin panel of your blood and then force them to explain to you why you don't have appropriate levels. )

4. I went to an allergist asking for hundreds of dollars in skin tests. He said he'd make a lot of money off of me if he did them, but it wouldn't be a definitive test. He (Dr. Howland in Austin, Texas who is celiac himself) said to get the $99.00 stool test from Enterolabs. I chose to order that and the genetic one from Entero Labs, but he had said the $99.00 would have been satisfactory.

* Doctors don't as a rule seem to be well-educated in nutrition and chemistry or preventative care. They also don't seem to do many stool tests. My friend is a vet, who of course does stool tests. Her first degree was also in chemistry. She looked at the test and said it made perfect sense to her. Looking in the blood for a reaction makes no sense because it is in the stomach and intestines where food reactions occur. This coincided with what Dr. Howland said about why skin and blood tests aren't necessarily conclusive. He said blood and skin tests are such a gray area that the serve more to confuse than actually help. I trust the man because he refused to take my money for an expensive skin test. And, I highly doubt he gets any "kick-back" for the $99.00 test he suggested I get from Enterolabs. And, well, he is celiac himself so he understands.

5. I found out that I am positive for gluten sensitivity and that I have TWO genes for celiac. This means my mother has at least one and my father has at least one. This make sense because my mother has a sister with mental illness of the schizophrenic variety and my cousin (Dad's side) is diagnosed schizophrenic. My mother is a nurse, her ill sister is a pharmacist, they have a brother who is a doctor. They are all wonderful people, but REFUSE to consider that there is an ailment that can be solved from food rather than prescription. But that is another story...

6. My sister and I shared a room growing up, so she saw the "real" me who was struggling with various issues all my life rather than the "public" part of me that drank cans of mountain dew to self-medicate. When her son was having problems similar to me pre-diagnosis, she was wonderful enough to get him tested with Enterolabs as well. With a gluten free /dairy free diet he is so much improved.

7. She also, at the recommendation of a great doctor, has used a vitamin from Thorne Pharmacueticals called Nutri-ADD. Open Original Shared Link

- Interestingly, the ingredients of it seem to make sense based on an enzyme activity article I recently found. Admittedly, I don't understand it all - but I'm going back to school for medicine now. Hopefully with a few more chemistry classes under my belt I'll comprehend more of it. In the mean time, it is simply interesting.

Good luck to everyone who is struggling with this. Hopefully I'll get a new degree, do some research and isolate the enzyme we need!

[hayley3]

HI,

Sorry to sound suspicious, but posting for a company in your first post, makes me think you work for a marketing company trying to sell your product.

[c2shopping]

HI,

Sorry to sound suspicious, but posting for a company in your first post, makes me think you work for a marketing company trying to sell your product.

Oh... "my first post" . Let me explain - I'm a teacher, not a marketing person. I am angry that I was misdiagnosed. I am angry that so many doctors try to make people with gluten problems feel inferior or crazy. I was worried that a woman who was pregnant was possibly hurting herself and her baby.

I tend to avoid posting things because I dont have much time and because I try to avoid the computer as much as possible. However, when I saw a note from a pregnant woman having difficulties I felt obligated to post. I am thrilled that because my sister listened to what I said, my nephew doesn't have to live the first 28 years of his life how I had to.

I also see many children every day who eat nothing but crap and it drives me crazy that no one is helping them. Have you looked in a school cafeteria lately? There is essentially nothing I'm allowed to eat there except iceberg lettuce, which really has no vitamins and therefore nothing to offer except fiber. Think about it, in many schools over 90percent of the kids get free lunch meaning they eat what is served. A significant portion of those kids likely have allergies - but are given no choice other than lunch room slop. As a teacher who can afford to bring her own lunch, I do - but I cringe watching students line up for plates of what is poison to many of them.

I don't post because I try not to get sucked into the computer. I posted that time because I felt obligated to help a woman protect her baby and herself. I volunteered as a prenatal educator and am rather passionate about the role nutrition has in developing babies and children.

[myammer]

Being diagnosed is irrelevent, if you feel better being gluten free, then just live your life that way. While I have been diagnosed, I know many people who just feel healthier with a gluten free diet- your doctors label is irrelevent, being gluten free can't harm you or the baby!

[GFreeTrial]

How did you finally get diagnosed with "gluten intolerance?" I think that's what I have..that's what an alternative specialist said....but my celiac panel blood test was negative except for my IgA was weak positive. Dr said I don't have celiac. Every Dr and rheumatologist thinks I'm crazy...i just want to find some answers to my pain...how do I get "diagnosed w/ gluten intolerance?" I've heard of entero labs, but it's so expensive. Should I try to find another Dr to diagnose me?

Find another doctor. There is no point wasting time with a doctor who will give you a hard time, especially if you are pregnant. You can still get more than adequate nutrition. You could potentially have a much bigger problem if you are consuming gluten when you shouldn't be. If you are malnourished you can not provide adequate nutrition to your baby. I really wish I had been dignosed before my triplet pregnancy. It may have made all the difference in the world for my kids. One of them has had major ongoing chronic problems after he was given formula against my adament requests. I knew our family had problems with tolerating milk (nearly every OTC formula is cow's milk based). My son had a very bad reaction to the formula and lost most of his intestines, was critically ill for a long time and has a huge host of major consequences a s a result. If I had been gluten free and he had received only breastmilk like I had adamently requested then it would have been a different story. All three of my kids (and my husband and I ) have been dignosed with celaic or gluten intolerance and it would have made a world of difference if it had been diagnosed earlier. I went to MANY specialists/accupunturists/alternative medicine specialists, GI drs, allergists, hepatologists before I got pregnant. I also went to an infertility specialist for 7 yrs before I got pregnant.

Everything could have been different if one of the people I went to diagnosed me !!!!!!

There is no harm that can come from a gluten free diet only good !!!!!

[brigala]

How did you finally get diagnosed with "gluten intolerance?" I think that's what I have..that's what an alternative specialist said....but my celiac panel blood test was negative except for my IgA was weak positive. Dr said I don't have celiac. Every Dr and rheumatologist thinks I'm crazy...i just want to find some answers to my pain...how do I get "diagnosed w/ gluten intolerance?" I've heard of entero labs, but it's so expensive. Should I try to find another Dr to diagnose me?

Check back with the "Alternative Specialist" and see what he put in your medical records. You may HAVE a diagnosis of gluten intolerance.

That's no guarantee that your other doctors will accept it, but that's true no matter who does the diagnosis.

I don't have a diagnosis, since I went gluten-free sort of by accident before I ever sought a diagnosis. By the time I believed it was my issue because of the miraculous health turn-around, I'd already gotten to the point where I couldn't bring myself to eat gluten any more. My doctor did order a blood test for me, but it was predictably negative... her point was that Celiac can be very serious, and if I was showing positive even on a gluten-free diet they would need to know that. All I have is that "Gluten" is listed as an allergy in my medical chart... so I guess if I end up in the hospital (which I hope not; I'm even planning a home birth) they'll have to give me gluten-free food, but to be perfectly honest I would have a hard time trusting them to prepare everything gluten-free. I get pretty sick just eating things that are prepared in a non-gluten-free kitchen.

Anyway, we put my son through the Enterolab tests, and he came back with elevated antibodies in the stool, and two copies of a "gluten intolerance" gene but no copies of a true Celiac gene. He feels much better on a gluten-free diet. My niece is going to do the Enterolab test next. My mom and sister have both been diagnosed with Celiac, though we don't really know for sure what their genotypes are.

I know the Enterolab tests are expensive, and I've chosen not to bother with them for myself although I'm super curious. But they wouldn't make any difference to me at this point; I already know I can't eat anything that MIGHT have even come in contact with gluten, so what else is there to know?

[kel72]

Hi becca, i just wanted to add that my tests came back negative due to the fact that i had been gluten free for a while.I am 20 weeks pregnant and have cut out all wheat/gluten and also yeast and feel so much better it is unbelievable. My sister and my aunt both have celiac, i have crohns disease and i'm working on the theory that, regardless of test results, my proof is how my health has improved, whether it is an intolerance or celiac, the end result is the same, i can't eat wheat or gluten so i am happy to go with that.