Questions To Bring To Celiac Specialist

[Guest BERNESES]

Although I've been gluten-free for almost a year now, I'm finally going in to see a Celiac specialist at Beth Israel in Boston ). I waited six months for this appointment so I'm going!

So, my story is this. In the summer of 2004, I started to get sick. I was depresssed sleeping six hours a day in addition to the amount I was sleeping at night, developed horribly smelly gas. Between summer 2004 and January 2005, I lost 20 pounds and was this as a rail. My primary care doctor suspected Celiac's- ran the test, blood work came back weak positive so I went gluten-free (no one told me not to) in mid-February. I saw my GI in March- he wouldn't even test me for it. The second GI i saw in April 2005 was willing to test for it but by the time he did the biopsy, I had been gluten-free for two months so of course it came back negative. The initial "agreement" between he and I was that if the test came back negative we would call it gluten-intolerance. Needless to say, I woke up from the anesthesia ans was kindly informed by him that it was 'all in my head".

But I digress. My primary care doctor believes me (thank God!) but I need a GI that does too to followup with. I want to go with some questions but i wanted to see what people would advise asking. I know I'm not going to get a diagnosis out of this because a biopsy would come back negative obviously. What are some questions YOU would ask in this situation. Thanks, B

[Merika]

Why do you need a gi guy to follow up with? If your primary care guy performed a test that showed you were positive celiac (and IMO there's no such thing as a "weak" positive, you're either above the cutoff number or below), what more is there? I mean, if you want to do a follow up blood test to make sure the antibodies have gone down and verify that you are in fact eating basically gluten free, just go back to your primary guy and have him run the test again.

I would think if you are seeing an "expert" you may want to ask questions about the future of celiacs, new research findings, factors they've seen help improve or hinder wellness in gluten-free celiacs, and so on. Some docs like to perform bone density tests and other "related" tests where they know celiac can affect your body. It is up to you whether you want additional tests performed, and what you would do with the results.

I like to know what my options are if result a or b is found, because if my behavior/diet/whatever won't be changed by the results, there is very little reason to perform the test.

I'm curious to hear what your appt. tells you, as my mom has also debated seeing a "specialist". Very curious to hear if you find it helpful or informative (or if you know more practical applications than they do). Please post when you've done it!

Merika

[Guest BERNESES]

The main reason I want to see a specialist is because some of my symptoms haven't resolved after almost a year of being gluten-free. I am still very fatigued, having mood swings, night sweats, nausea and persistent chills. I want to see if I or my primary care doctor are missing anything. I have some questions that I'd like answered by someone who actually specializes in the disease. My primary care has been great but she's not a specialist.

Also it's not a GI "guy"- it's a GI "girl" which I think will be nice for a change as most of the GI guys i've encountered have been arses!

[Claire]

The main reason I want to see a specialist is because some of my symptoms haven't resolved after almost a year of being gluten-free. I am still very fatigued, having mood swings, night sweats, nausea and persistent chills. I want to see if I or my primary care doctor are missing anything. I have some questions that I'd like answered by someone who actually specializes in the disease. My primary care has been great but she's not a specialist.

Also it's not a GI "guy"- it's a GI "girl" which I think will be nice for a change as most of the GI guys i've encountered have been arses!

Just saying the word 'chills' gives me chills. I shivered (with simultaneous itching) for 10 years before food intolernaces were identified as the cause. Unfortunately, though wheat, barley and rye were identified - gluten was not specifically identified. Just taking away flour saturated foods cured the severe chills and itching - though I continued to have isolated episodes.

I do not have Celiac. No HLA test has been done yet. I went totally gluten-free in August on the advise of neurologists testing me for the cause of ataxia. Some of the food reactions have re-emerged and that includes itching and chills. Not severe but enough to disturb sleep and make me uncomfortable.

Don't blame gluten for everything. Other food intolerances may well be your problem. Claire

[Guest BERNESES]

Claire- I've done an elimination diet and find that soy is not great for me nor is lactose. So I pretty much cut both those out. I know that I may well have other food intolerances but they seem to be very elusive (as I'm sure they are-like gluten). I'm also curious about cutting down on some of my medications now that I'm actually absorbing them, I'm wondering if I'm being over-medicated and thus, the fatigue. I think it will be good just to see what she has to say.

But I'm actually starting to regret this post as it seems people's tone in their responses is almost defensive about it. I actually expected people to be more supportive.

[ianm]

It wouldn't hurt to see a specialist if you are continuing to have problems. In your case there is obviously more than gluten, soy and lactose going on.

[lonewolf]

My primary care doctor believes me (thank God!) but I need a GI that does too to followup with. I want to go with some questions but i wanted to see what people would advise asking. I know I'm not going to get a diagnosis out of this because a biopsy would come back negative obviously. What are some questions YOU would ask in this situation. Thanks, B

Good question. I'm wondering if I should take my PCP's recommendation to see a GI. And I was wondering what I would ask if I did go in. The obvious questions for her would be to ask if she is familiar with all the other food intolerances that often go along with Celiac, ask about the medications you're on, discuss your specific symptoms (writing all of them down ahead of time is a good idea), and let her ask you questions. If she is a Celiac specialist, then she should be a "wealth of information". Sorry I can't be more helpful. I think it's great that you are getting in to see someone knowledgeable.

Good luck!

Liz

[jerseyangel]

Bev--Don't regret the post, it actually came up the day I go to my GI for a follow up. In fact, I have to leave after I post this. I was reading with interest to see if there was anything I should ask. I'll fill him in on what I've encountered with respect to other food intolerances, my lingering symptoms, etc. Maybe he will be of help, and maybe not--but I at least will get his opinion. Good luck on your appointment

[Claire]

Claire- I've done an elimination diet and find that soy is not great for me nor is lactose. So I pretty much cut both those out. I know that I may well have other food intolerances but they seem to be very elusive (as I'm sure they are-like gluten). I'm also curious about cutting down on some of my medications now that I'm actually absorbing them, I'm wondering if I'm being over-medicated and thus, the fatigue. I think it will be good just to see what she has to say.

But I'm actually starting to regret this post as it seems people's tone in their responses is almost defensive about it. I actually expected people to be more supportive.

Don't regret the post. While there are some forum members who generally speak against tests, specialists etc. there are many others who do not. I for one, couldn't do blood testing for Celiac, so gene testing was a must. After years without answers and with worsening symptoms I have to go to tests and to specialist - even without abundant confidence in either because I might just get lucky. There are others here also where sickness and desperation lead them to investigation that others think unnecessary. Self testing does have limitations. The body itself may be a good judge but we are not always so swift to understand what the body is telling us - especially if we don't understand the physiological processes involved. Always ask "what is the worse thing that could happen if I do this"? If the worse thing is that you don't know any more than you do now - what else is new? Claire

[Guest BERNESES]

Thank you for your encouragement- I waited six months to get this appointment and I'm hoping it will help me troubleshoot what do in areas that have not resolved. I wrote out a complete medical history and then what's currently going on:

Symptoms that have Improved (unless I get gluten in my system):

• gained back weight

• constipation

• noxious gas

• diarrhea

• tarry stools

• bruising

• nails growing again

• more lactose tolerant

• facial acne

• arthritis in neck and lower back

• chronic ear infections

Symptoms I am Still Struggling With:

• fatigue (need to nap frequently)

• night sweats

• feeling cold often (goosebumps)

• nausea (take Phenergan as needed)

• mood swings

• eczema in ears

• micro-sensitivity (reacted to an Amy’s Kitchen Gluten-free dinner that was found to have 33 parts per million of gluten in it)

Questions:

1. Could I need to reduce medications since I am now absorbing food/nutrients? Could being over-medicated cause my fatigue?

2.Should my thyroid and or gallstones be looked at more closely? Also, have never had a colonoscopy.

3.Low blood iron/ anemia?

4.How long does it take to “heal” and feel back to normal?

5.Night sweats?

6.Pregnancy?

It certainly can't hurt and in looking at their website, it says that they are accustomed to treating patients witj other foood intolerances that go along with Celiac.

Thanks everyone, i'll let you know how it goes! B

Oh yeah- Claire- how were your food intolerances diagnosed? And what is an HLA test? thanks, Beverly

[Claire]

Oh yeah- Claire- how were your food intolerances diagnosed? And what is an HLA test? thanks, Beverly

I was originally tested in 1990 by Immune Labs - Open Original Shared Link

I have since been tested by this lab twice - this because I develop new sensitivities - usually because I find a food I can eat and eat too much of it and then it becomes reactive.

In truth these tests do produce false positives. I am told that York Labs is making a renewed effort to avoid this. Generally labs do get the right ones right but get the false ones as well. Usually when you see the list you will immediately react by being doubtful of some. These are the ones you put to a challenge - remove from your diet for a couple of weeks at least and then reintroduce. It is easy to eliminate the false positives.

Check out the website for Immuno Labs - many good reasons to select that one though York is a good choice too.

Several months after my first test I went to an Ayurdevic clinic outside of Boston where, by a completely different approach, the very same reactive foods were identified. This gave me more confidence - in both methods.

By HLA I am referring to the genetic test that identifies 'gluten sensitivity' or 'autoimmune gluten sensitivity' or 'gluten intolerance' or whatever name gets assigned to this opposite side of the celiac coin. I do not have Celiac. Few labs test for gluten sensitivity. My genetic Celiac test was done by Kimball labs - without the sensitivity test. As far as I can tell only Enterolab tests for both - without insurance coverage. Gluten sensitivity is proving to be a greater source of neurological disorders related to gluten than Celiac. I have neurological problems - still of undetermined origin.

Hope this answers your questions. Good luck with your specialist. Claire

[Guest BERNESES]

Thanks Claire- That was very helpful. Would you mind telling me the name of the Ayurvedic clinic you went to? I live about an hour north of Boston so it would be accessible to me and I have been thinking a lot about trying "alternative" therapies. I've read a bit about Ayurveda and it REALLY seems to make sense to me. Thanks, Beverly

[Guest nini]

speaking of alternative therapies, just a side note, about 10 years ago I had a kinesiologist tell me that wheat was poison to me... did I listen??? nope.

re: questions for a specialist, I guess I would ask them what else it could be if it's not celiac, what kind of testing would need to be done, would you need to be consuming gluten for the tests to be accurate and why... you seem to know that gluten is at least a part of the puzzle, so I would ask if the remaining symptoms are because of being undiagnosed into adulthood, or from something else entirely. Then, being the skeptical person that I am, I would research all of the answers to see if it made sense to me.

on a personal note, I was positively dx'ed with Celiac, I know that's at least part of my problems... and almost 3 years into this, while there is a lot of dramatic progress with weight loss and digestive symptoms, I still have issues with fibromyalgia pain and other neuromuscular pain. My blood pressure is better but still borderline hypertension... so I would be wanting to know if my ongoing symptoms are because I may be getting accidentally glutened or is it something else?

[jenvan]

Nisla--

I feel your pain (literally!)... I have been gluten-free for about a year, which I know I have a while to go on healing probably still, but there has been no improvement on my muscle/fasica pain, FM. FM is a real pain in the as* ! I am still exploring other ideas, but most 'docs' have little help to offer. I fear it will never get better, but try to stay positive as there are a host of things I haven't tried yet. I don't attribute mine to getting gluten still...maybe other food intolerances, residual issues from having Celiac, deficiences, dopamine....who really really knows?? Guess I'll continue to experiment on myself...

[Guest nini]

Jenvan, I know, FM is a major pain, literally. I take Ultram still, every day for it, and sometimes add Tylenol to the mix, but I hate to do that since my tummy doesn't react well to too much Tylenol... What I really need is a massage EVERY DAY, but like that is ever going to happen!

I'm wondering if I have other food intolerances too... I think I've noticed that I've started having issues with things with soy in them... I don't know for sure if it's the soy. And I'd really hate it if it was because I love soy! Oh well. Things I am not willing to give up yet, chocolate, coffee, rice, potatoes, chocolate, beef, did I say chocolate?

Sorry to go off topic!

Oh and Bev, meant to say, don't regret this post, it's really hard to tell someone's tone just by the written word, and easy to be misunderstood. I think for the most part on this board just about everyone is here to help and be helped... that's what a support group is all about. Opinions are like a-holes too, everyone has one!

[Rachel--24]

Beverly,

I sincerely hope you have better luck with getting answers to these questions than I did. The "specialists" were of no help when it came to the lingering problems.

I recently started seeing a doctor outside of the "mainstream". I have to say he is far more knowledgeable than ALL the doctors I've seen previously put together. He's currently running tests to rule in/out other causes. He said not every person can regain their health simply by going gluten-free because after gluten damages the intestines and causes leaky gut...many problems can develop as a result. One thing leads to another and the more the immune system is having to deal with the more we are vulnerable to infections and such.

He said recognizing gluten as a problem was the best thing I ever did for myself and even though I felt good at first I eventually "stalled" and started going downhill again. According to him this is because there are still other issues putting a strain on my immune system and one can't recover 100% until the other causes are found and eliminated.

Even though a gluten intolerance may have gotten the ball rolling its not always the ONLY issue by the time its diagnosed and the diet is started. I'm extremely sensitive to chemicals and have many food intolerances. He's not so concerned about figuring out the food intolerances as to figuring out WHY I'm this sensitive. He says there is always an underlying cause and whatever it is...its keeping my gut from healing. The leaky gut and over-stressed immune system are in turn causing more sensitivities. Its a vicious cycle.

[jerseyangel]

speaking of alternative therapies, just a side note, about 10 years ago I had a kinesiologist tell me that wheat was poison to me... did I listen??? nope.

Same here--except it was only 2 years ago. It was literally the first time anyone had said that to me.

I had an appt. with my GI today and was a bit underwhelmed. I asked him about the other intolerances--especially the other grains. He just said that I may be sensitive to them, but the only thing I really have to worry about is the gluten. Told him about my upper GI pressure/belching/pain. He felt around a little and told me to take Phayzime. I asked about digestive enzymes--saying I felt they were helping with the indigestion--he told me not to take them so often. (because if they get caught in the esophoghis, they can damage it) I felt that he was in a hurry every time I asked a question. And that was it. He said I was doing well and to come back in 1 year. I guess he did his job--I finally got diagnosed and am on the right track. I just need someone that I can go to and say "now what?"

[Guest BERNESES]

Rachel- I'm sorry- that is a drag. And you too Jerseyangel I hope I have some luck too. My plan is this- see how this goes and if nothing happens then I'm going the alternative route as well. Actually that was my first plan, but insurance will cover this and not the naturopath.

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 don't think I'm still getting glutened. I've become pretty adept at this especially knowing how senssitive I am, but I wonder if it's just taking a long time to heal because I was undiagnosed for so long or if there's additional problems that I am not addressing. Thanks everyone, Beverly

PS. Nini- you are a howl! The difference between opinions and buttholes is that not everyone is willing to stick their butthole in your face.

[Guest nini]

that's a good thing right...

[Guest BERNESES]

Yes indeed!

[jerseyangel]

My husband always says it this way--Opinions are like a--holes--everybody has one and they all stink!

[Guest nini]

yes, fortunately people aren't like dogs... here's my butt, smell me, let me smell your butt, oooh oooh oooh (GROSS)

[Guest BERNESES]

But funny! You guys al;ways make me laugh!

[Claire]

Thanks Claire- That was very helpful. Would you mind telling me the name of the Ayurvedic clinic you went to? I live about an hour north of Boston so it would be accessible to me and I have been thinking a lot about trying "alternative" therapies. I've read a bit about Ayurveda and it REALLY seems to make sense to me. Thanks, Beverly

This was a long time ago and I really had to dig a bit to refresh my memory. My daughter went with me and we agree that this is probably the right information. If the home page showed the building I would know for sure but it doesn't.

Lancaster Ayurveda Medical Centers. ... Sterling MA 01564 Tel: 978-422-5044 • Consultations are held at 104 Leominster Road, Sterling, MA.

Where do you live?. I lived in MA for many years - Newburyport, Salisbury and Ipswich. Came to PA in 1995. Miss NE very much. Claire

[Merika]

Hi Berneses,

I'm sorry if I offended you by my post. It was not my intent. I wasn't sure what your question was in the initial post and was just tossing things off my head that *I* would want to ask somebody.

I am very skeptical of doctors, I'll say that right here upfront. It's not to say they don't have their place, but my own experience has been that they are not very informed about celiac. Even the experts in my area (major metropolitan city), some of whom I've met, respect, and like, acknowledge they often learn more from their patients than they ultimately can offer. There is not a lot of research in this disease, and most of it is coming out of Europe (Italy mainly, I think) and it is very new.

I am honestly curious about what you gain from the visit with your gi girl (though you gotta know, I'm from Chicago originally and often refer to anyone as a guy, as in "hey you guys" ;-) ) It would be nice to be told I am wrong, and that there really IS someone out there who could offer us something.

I commend you for making the appointment with her just 6 mos into your diagnosis! Your question about the meds sounds brilliant. Really And it is probably something she can answer for you.

As for being gluten-free for one year and still not feeling all the way better, well, I was right there too. And still am, though less so another year later. It seems normal to me that if you were really sick from celiac for a long time, that you would need more than one year to regain your health. And of course, there is the possibility that some of us may never fully recover. I face that everyday. I suspect I will never be the same person physically or mentally that I was before celiac started causing me problems. And of course, I am 14 years older than I was then, so how could I really be the same person, yk?

Again, sorry if I offended you,

Merika