Questions To Bring To Celiac Specialist

[Guest BERNESES]

Hi Merika- You didn't offend me, I was just taken aback and truth be told, I may have been over-sensitive to anything anyone said because I am nervous as hell about this appointment. I'm in the same position as you. I just feel like I'm not getting that much better. I mean, I know I am in baby steps, but I'm very frustrated because I thought by now I'd be feeling a WHOLE lot better. Probably unrealistic.

I'm very skeptical too because like I said, the two GI's I went through while I honestly felt like I was dying were total arses. One scared the hell out of me by testing me ffor everything under the sun (HIV, cancer, etc) and refusing to test me for Celiac's at all. The second one seemed like he was going to be good then flip-flopped on me at the last minute and told me it was "all in my head." Not be sexist, but I was hoping a woman would be more likely to listen (that's so funny that you call everyone "guys"; I do too). But we'll see.

If I get nowhere, then I'm goiong the alternative route. But no one, no how will convince me to go off this diet. That part won't change.

You definitely didn't offend me; I'm just scared. And I hope you're right- mayb e there is someone out there who knows something. Let's keep our fingers crossed! I'll let you know what happens. Hugs, Beverly

[PreOptMegs]

Question.... what is the difference between being gluten intolerant and celiac. Aren't they two sides of the same coin? I saw it posted earlier that she was thought to be gluten intolerant, but not celiac????

[Claire]

for PreOptMegs -

Sometimes this board frustrates me. I had a reply to your question all finished when it just vanished into thin air!

I have been using this phrase 'two sides of the same coin' for awhile now because I am convinced that is exactly what it is. In the book 'Dangerous Grains' there is a brief discussion regarding having these two disorders called by the same name.

Celiac is confirmed by a positive blood test AND a confirming intestinal biopsy showing intestinal damage. Without the intestinal damage a doctor will not confirm Celiac. However many people with Celiac have doubtful blood tests and many have no intestinal damage. This clouds the diagnostic picture.

Gluten Sensitivity seems to have many names and can be identified by genetic testing. Blood testing can confirm antibodies - if you are not gluten-free or been generally on a reduced gluten diet. This disorder is very much associated with neurological damage - though Celiac may have that too. It is less likely to show intestinal damage.

I do not have Celiac. I do have intestinal damage. I have neurological damage. I have not yet been tested for gluten sensitivity.

If this doesn't confuse you - it should. It is confusing. Claire

[jenvan]

Claire-

I think what you are saying is a good reminder. Practially speaking, we are still in the 'dark ages' of Celiac knowledge in many ways....it is still so new, and so little real research has been done, and so much understanding has yet to come. Perhaps in the future we will look back with regreat at those who didn't meet the "classic" Celiac diagnosis but had a form of gluten intolerance (most likely with unseen organ/system damage), and were written off and not encouraged to go on a gluten-free diet.... There is so much still to learn.

Berneses-

Hang in there girl. You are living out the rule of being your own advocate... Things that made real sense to me were still disregarded in many of my docs appts. ie. other food intolerances. It is frustrating feeling like you are playing the role of both doctor and patient. I thought the questions you had written down were good. In response to #4...the Celiac nurse I communicate worth says 2 years to feel 'normal' again. Hang in there!

[Rachel--24]

Rachel - Your doctor seems exactly like what I need! There is a naturopath in New Hampshire who specializes in Celiac's (she apparently almost died due to complications of undiagnosed Celiac's) and she's supposed to be wonderful. So she is my next course of action. How did you find yours?

I found my doctor without really looking...his number literally just showed up in my hands. I was shopping in a health store with my Mom and she picked up a flier and handed it to me. It was for gluten free resources....support groups, food places, doctors, etc. It had only 3 doctors and one I'd already tried to see but couldnt cuz of not being biopsy proven. I had just found out earlier that day that she only sees celiacs w/ confirmed biopsies. Anyway, I just called this guy cuz it said "Celiac Specialist" and I was desperate. I had no idea he wasnt mainstream till I got there and it was like...finally....someone speaking my language. He started talking about Dangerous Grains and basically all the stuff I'd learned from that book and from this site. He really knows his stuff so I guess I can finally relax and just be a "patient" for once.

I'm hoping he can really help me finally...maybe he was a gift from God. Everytime I start getting frusterated, scared and desperate something always happens to steer me in the right direction. Somebody is really looking out for me I think.

[CMCM]

for PreOptMegs -

Sometimes this board frustrates me. I had a reply to your question all finished when it just vanished into thin air!

I have been using this phrase 'two sides of the same coin' for awhile now because I am convinced that is exactly what it is. In the book 'Dangerous Grains' there is a brief discussion regarding having these two disorders called by the same name.

Celiac is confirmed by a positive blood test AND a confirming intestinal biopsy showing intestinal damage. Without the intestinal damage a doctor will not confirm Celiac. However many people with Celiac have doubtful blood tests and many have no intestinal damage. This clouds the diagnostic picture.

Gluten Sensitivity seems to have many names and can be identified by genetic testing. Blood testing can confirm antibodies - if you are not gluten-free or been generally on a reduced gluten diet. This disorder is very much associated with neurological damage - though Celiac may have that too. It is less likely to show intestinal damage.

I do not have Celiac. I do have intestinal damage. I have neurological damage. I have not yet been tested for gluten sensitivity.

If this doesn't confuse you - it should. It is confusing. Claire

Claire...did you have a biopsy then? Is that how you know you have intestinal damage. I wonder of OTHER sensitivities also cause intestinal damage....maybe gluten isn't the only substance that can do that.

Ultimately, I'm wondering if people shouldn't just start with the most basic of diets, then add various things into the diet one by one to see what you are affected by. Then again, if you can be a celiac with NO symptoms, then you might never know exactly what you are being damaged by. From reading Dangerous Grains, it seems that author strongly feels that gluten and dairy are the worst offenders.

[Claire]

BERNESES -

Did you see my post to you re the address you asked for. I put in with a quote and I have noticed that sometimes people don't back up to read things posted that way rather than as a new reply at the bottom..

Claire

[Guest BERNESES]

Well- I made it! it was CRAZY. We almost didn't make it because they shut the road down halfway into Boston about 4 cars ahead of us due to flooding debris and high winds. We sat there for about twenty minutes and just when I had given up all hope they opened the road and my husband gets the Hubbie of the Year award for getting me there- it was raining so hard you could barely see. I was 15 minutes late but at least she saw me and I got to talk to her.

So essentially the end result was this- she drew blood for the HLA gene test and I'll get the results back in about 1-2 weeks (DQ2 and DQ6 I think, but don't hold me to that, I don't have the info in front of me). She scheduled a bone density test, an abdominal ultrasound because she can't believe that no one has bothered to follow up on my gallstones, she did a blood test to check for vitamin and mineral deficiencies as well as liver function, thyroid, the usual.

She was HORRIFIED at the story of my diagnosis or lack thereof because she said basically it sounded like text book Celiac's and that she couldn't believe that the first GI had even refused to test for it. Anyway, she basically said that she wants to wait on the results of the gene test and if that comes back positive then we're calling it Celiac's because she thinks a gluten challenge and another endoscopy is ridiculous.

I have lots of follow up appointments for testing and such but I felt like this woman LISTENED. I'm withholding judgment until this is all said and done but my husband and I both felt like she was kicking butt and taking names when it came to figuring out what the heck is going on. She's the first MD I've met who actually believes in trsting for other food intolerances (we are going to do that including the lactose breath test).

The funny part was that she asked me how I was diagnosed with IBS and lactose intolerance and i said "I was told that's what it was." She just looked at me like "And who are you going to sue first?" It was quite funny!

My computer is on the fritz today so I may not get to check back, but like Jen said it was the first time in a long time I felt like i could be a patient.

Claire- I did get the address. Thanks so much. I live in Portsmouth, NH but grew up in Lynnfield, MA.

[jerseyangel]

Bev--So happy that your new Doc. listened and took action! Keeping my fingers crossed that you finally get the answers you've been looking for . Sounds good, though.

[jenvan]

Good news girl! Hope this doc helps answer some of your outstanding questions...

[Guest BERNESES]

Thanks guys- like I said I'm reserving judgment until all the racehorses are in, but at least I feel like she took me seriously. Also, a little more good news. I started cutting down on my antidepressant and and my anti-anxiety medication and lo and behold- I have more energy! Like- I could almost use the words "motivated and cheery" today, but I'm being cautiously optimistic about everything at this point! Thanks for all your support, B

[Amzippity]

I'm glad you posted this thread because next Thursday I'm going to Beth Israel to see the same specialist as you - Catherine Cheney (I saw it posted elsewhere on the board) - and I logged onto this site for recommendations on questions to ask.

I know I have gluten intolerance (I'm not sure whether or not it's Celiac) and I'm getting tested just so that I know for sure. (So shoot me. ) After getting sick all my life, it will be nice to know the real reason, instead of making guesses like IBS and lactose intolerance.

I'm glad to hear that she listened. Now I'm even more excited for my appointment.

[Guest nini]

Good to hear that you had a good visit, that is encouraging

[Amzippity]

I'm sorry, but I just saw that you were looking into a naturopath in NH. Were you referring to Dr. Doherty in Nashua? I visited their office over the summer (around the same time I made the appt with Dr. Cheney) but unfortunately insurance doesn't cover naturopathic medicine. The office seemed very nice and they were very helpful. They even looked at my blood work for a nonrelated issue as a favor.

[Guest BERNESES]

Amzippity- I think you'll be impressed with Dr. Cheney- seriously- she was a no BS- let's get down to this and find out what the heck is going on. And yes- my next route was Dr. Doherty in Nashua! I didn't expect to get a gene test out of an MD (sad, but true) but now that I got that I'm going to see how things go with Dr. Cheney because Dr. Doherty is expensive. But at least there are options. Please let us know how your appointment with Dr. Cheney goes! So far, I give her a good rating! Beverly

[Amzippity]

Thanks!

I was looking forward to my appointment before, but now I'm REALLY looking forward to it. I'm going to have to look around the forum a bit more. I have a feeling I might spend a bit of time here.

[Claire]

Hi Berneses - I am so glad you got some good vibes with your new Doctor. I must admit that I am on the down side right now. I have appt. with GP tomorrow. It is generally a waste but I am asking for some other tests and I have to have a doctor to order them - so she is it. This is the one who said I was too old for celiac and she had never heard of a Type II, Delayed Food Reaction!

It sounds like maybe you got lucky. I have kept hoping that would happen but it doesn't seem to.

I always liked Portsmouth - all of NH for that matter. I traveled around those White Mountains for a long time. Like I said, I do miss New England. I miss it more than I miss my 'native land'. I was born and grew up in Nova Scotia, Canada.

Sure hope your tests are conclusive. Claire

[Guest BERNESES]

Thanks Claire- I feel like at least we're getting somewhere (although I am withholding further judgment). You are in PA now? New England is great- Portsmouth is a really cool town and I love the White Mountains. I'm sad because I think we'll be moving to Massachusetts soon (husband's job) but it's still close enough. That's what I like about New England. in most cases, at max, you are a short drive to the mountains or ocean.

Hope your appointment goes well. Hang in there. I love my GP but you're right- they're knowledge is limited in the food intolerance area. Best, Beverly

[Canadian Karen]

Beverly,

Sounds like you hit the jackpot!!! It sounds like you are in really good hands with her! I am so happy! It is rare indeed to find a doctor like that.

Hugs.

Karen

[CMCM]

I'm glad you posted this thread because next Thursday I'm going to Beth Israel to see the same specialist as you - Catherine Cheney (I saw it posted elsewhere on the board) - and I logged onto this site for recommendations on questions to ask.

I know I have gluten intolerance (I'm not sure whether or not it's Celiac) and I'm getting tested just so that I know for sure. (So shoot me. ) After getting sick all my life, it will be nice to know the real reason, instead of making guesses like IBS and lactose intolerance.

I'm glad to hear that she listened. Now I'm even more excited for my appointment.

For what it's worth, the author of Dangerous Grains says many people who study celiac disease believe that there should not be TWO names (i.e. celiac disease and gluten sensitivity). He feels it should ALL be designated as gluten sensitivity, that they are not really two separate things.

[Guest BERNESES]

I know- there seems to be some disagreement over this. I read Beth Israel's official "stance" on gluten intolerance vs. Celiac's which is something like this: Patients who are gluten intolerant but do not have Celiac's should be counseled that they can continue to eat gluten without damage, but may want to avoid it if it makes them feel unwell.

I was like WHAAAATTTT????????? I DON"T think so. That was the only negative part of my experience so far. It was worded that a gluten intolerance was minor like a lactose intolerance that you can just pop some Lactaid for. I don't think ANY intolerance (gluten, lactose or otherwise) should be thought of as minor. We can all attest to that!

[Canadian Karen]

I am myself trying to understand the difference between the two. Right now, I am trying to counsel my sister. I had FINALLY talked her into going for the bloodwork for celiac because she has ALL the same problems as me, except instead of the big D, she has the big C. Her bloodwork came back negative and basically was told by the GI, "You don't have it, don't worry about", end of story..... I am trying to explain to her that you can have gluten sensitivity or gluten intolerance without actually testing positive for celiac.

I am thinking of buying her the book "Dangerous Grains". I myself have not read it, but have hear very good reviews. For those of you who have read it, would it help my sister in understanding?

Hugs.

Karen

[jenvan]

Karen-

I am finishing reading it right now. If she has an open mind, it just mind make a believer out of her! I haven't read through the appendix yet, but at times I feel like some of the evidence is weak at certain points, but either way, think the book is good and has influenced my thinking.

[Guest BERNESES]

I haven't read it (I know I should) but my thought is if you are symptomatic or have a sibling with it, better safe than sorry. I'd rather err on the side of caution than find out years down the road I had done damage because of a faulty blood test or weak research. No matter what my gene tests say I'm staying gluten free.

[Guest BERNESES]

I got my preliminary blood work back today (not the gene test). Here's what was off:

My red blood count: 3.87 (low, scale 4.2-5.4)

MCH 32. 7 (high, scale 27-32)

Ferritin 7. 9 (low, scale 13-150)

Thyroid PTH 66 (high, range 15-65)

What does this all mean? None of it looks too bad. I haven't talked to her but assume I will when the gene tests come in. I'm most curious about the ferritin (iron, right) and the thyroid PTH (does this mean I have hyperthyroid?). Thanks evryone, Beverly

Still have a bone scan and abdominal ultrasound- fun, fun, fun!