Before I Visit The Doc...

[jabberwife]

I have an appointment with a gastroenterologist (that is very involved in the Celiac support groups here in Dallas) on Wednesday. My reason behind going - I have had IBS-C for several years (actually, as long as I can remember...but diagnosed only for about 6 years.) I have tried it all, changing diet (I eat healthy), relieving stress, exercise, increasing fiber. Also laxatives, both prescription and OTC, only to have them stop working within days. In addition, I commonly have horrid gas. (sorry TMI) Have been blood tested for celiac back in 2004, came back negative. Also did Enterolab in 2006 (after about 3 weeks gluten-free), came back negative, but I have two genes for gluten intolerance.

HLA-DQB1 Molecular analysis, Allele 1 0603

HLA-DQB1 Molecular analysis, Allele 2 0602

Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6)

Makes sense, my father, brother, and sister are all celiac or gluten intolerant (my brother and sister are not clinically diagnosed).

Anyway, so I dealt with my "IBS" diagnosis. But since about November, I've felt increasingly fatigued, my skin was drier, and I couldn't seem to get energy, no matter how much sleep I had. I was getting tingling in my hands more frequently. And the brain fog! Increasingly, it was as if someone pulled a blanket over my eyes. Starting in May, my heartburn got much, much worse, and so I made a point to list out all symptoms to my doc. I told him that I felt way too old for my age! (I'm only 29, and am at an appropriate weight and everything) Told him the only time I felt a bit more energetic was when I was taking B12 supplements. He didn't have much to say, but took a blood test to check hormone, iron, and B12 levels. B12 was low normal, even though I was already taking supplements and had a big fat steak the day before. He suggested I supplement and come back to be rechecked. Also told me to take Prilosec for heartburn.

Frustrated (and after the Prilosec didn't work), I made this appointment. Also, I went gluten-free as of June 24. Been logging every meal, and all symptoms, since July 1. I have felt somewhat better (my mind is clearer) but GI symptoms aren't gone. Still C. Gas is more or less gone though, I no longer have the horrible bloating pains nearly as often. And the fatigue is better, and the tingling hands only has happened once in the past month. The heartburn has improved, but it's still present.

So, I'm looking for advice when I go visit this doctor. What should I ask? I want to tell him about the gluten-free diet trial, but I wonder if I should do a gluten challenge, and when? I want to tell him what has improved, and what hasn't. Do I demand tests? If so, what tests do I ask for? I want to know what to make sure I mention and ask, so that I can get the most out of this appointment.

Thanks everyone!

[ang1e0251]

I believe I would make a list of every single symptom you've had and chart how the gluten-free trial has affected each one; 100% gone, 50% gone, unaffected, etc. I would review your family history and gene testing with him. Also bring the blood test results with you. You didn't mention what those were but they could be interpreted differently in a second opinion. For example, you could be IGA deficient which could mean blood tests will always show negative whether you have celiac disease or not. I would ask if the family history and gluten-free trial would be enough for him to diagnose you or what he would consider the next step to be.

Be prepared for him to ask you to conduct a gluten challenge, eating gluten again for 6 weeks - three months followed by blood work and an endoscopy. That would be a common next step for most GI's. If you think you cannot do that, be prepared to say why but also to listen to his reasons for doing it.

[ohsotired]

Hi jabberwife!

I'm curious who this doctor is......would you mind sharing? (You can PM me if you like.)

I like my current GI, but would love to see someone that is more knowledgeable about Celiac!

The symptoms you mention (dry skin, fatigue, brain fog) sound like they could be thyroid or adrenal related.

Have you had your thyroid checked? Or it could also be that your body is using energy in an effort to heal itself.

You've only been gluten free a month or so, right? Some people take months to start really feeling better.

[jabberwife]

The doctor is Dr. John Secor, MD. He's at the Dallas Presbyterian Hospital. He is an active advisor for the Lone Star Group for DFW Celiac. I haven't seen him yet, so can't give a personal recommendation, but I figured with his interest in celiac, it was a good place to start. (My current PCP labeled celiac as a disease where you only have diarrhea... )

I had thyroid checked. Came back normal. After I saw the PCP, and he came back with my B12 levels being low normal, he suggested I take a sublingual supplement, 1000 mcg a day. I was taking a siblingual pill, 2500 mcg, every other day prior to the test (for about a month). I switched to a liquid sublingual supplement that was 1200 mcg a day (couldn't find 1000). That actually has helped the fatigue somewhat. And I'm no longer having these crazy dizzy spells where I feel like I'm going to pass out. Also, my feet used to swell. Not significantly, but enough so that my shoes would pinch and be really uncomfortable. No swelling issues anymore...I think my body retains less water since going gluten-free, my rings are looser and everything.

I'm wanting to be patient on the gluten-free diet. I talked with my sister, and it took her 4-5 months to feel better. And while I went gluten-free before (for almost a month), and didn't feel significantly different, I now am much more aware of what I eat, as I rarely eat anything processed. I'm a meat/whole veggies/whole grains (rice, quinoa, corn) kinda gal now!

Anyway, I hope that visiting this doctor can provide some answers. I don't mind going undiagnosed as far as celiac is concerned so much, but I do want to have some assurance that I'm on the track to healing. Also, if there's anything else that could contribute to my not feeling well, I want to find out what it is so I can fix it.

Thanks!

[ohsotired]

Thanks for sharing! I'd love to know what you think of him after your appointment. I do agree, though, with his interest in Celiac he's likely to know more than the average GI doc.

My GI doc didn't know much about Celiac before I came along. He's been very open minded about everything I've talked to him about and actually done research on his own, but sometimes I wonder what we might be missing, ya know?

Oh, and your PCP sounds like mine too. "You can't be ________ unless you have __________." Guess what? I'm not like everybody else!

As far as the tests you've had run, are you getting copies of all your lab results? So you can see what the doctor's deem as 'normal'? Because you aren't just a bunch of numbers on a chart, you're a real live person! You also want to get those lab sheets to make sure all the appropriate tests have been run, too. For example if your PCP only ran a TSH to test your thyroid, and deemed it normal by what he saw on the lab results, then he didn't do a very thorough job, since TSH only doesn't tell you squat.

You mentioned your sister.......is there a family history of Celiac or gluten sensitivity? Like ang1e0251 mentioned, make sure you let him know about that, as well as your list of symptoms - write them down. I've tried going into a dr's office with the list in my head, chanting it over and over to myself so I wouldn't forget, and as soon as the dr asks me a question, I forget half of it! LOL

Good luck with your appointment! I hope this doctor helps! Please keep us updated with how it went!

PS. You have some awesome recipes on your blog!

[jabberwife]

I'll let you know how the doc visit goes. I did create a list of the symptoms I was having, plus notes on what is still occurring, what is better since the gluten-free diet, etc.

I think it's definitely genetic - my dad, sister, and brother all have it!

I don't have the actual blood tests. (Should've asked for my PCP to send a copy - duh) I do have the email from the doctor after my last visit though. I'll call them to see if they can email me the actual test results, although it's kinda last minute.

Also bringing my old Enterolab results. Not sure how well those will be recieved, but bringing them might be of some use.

Wish me luck! Thanks for your help.

[ohsotired]

If you can't get your hands on your past bloodwork before your appointment, ask Dr. S to have them faxed over, and that way they'll be in your file. You might have to sign a HIPPA notice for the other doc's office if you haven't already.

But definitely get your hands on them, for your own records and so you can see them with your own eyes.

Good luck tomorrow! Keeping my fingers crossed for you!

[jabberwife]

The doctor's visit:

Dr. Secor is a really great guy. I know I've only been for 1 visit, but he sat down, listened and took notes of all of my issues, looked through the copies of blood work and my Enterolab results (which were negative) I brought, and then explained all that he knew of celiac disease, gluten intolerance, etc. He does understand that a lot of the symptoms of celiac where what I was presenting with...however, my gene testing shows that since I don't have DQ2 or DQ8, I don't have celiac. Could have gluten intolerance though...as for gluten intolerance, he suggested I continue with my trial diet, as I have been doing, and test it in a few weeks...and if I feel better without gluten, then so be it.

He spent more than 30 minutes with me, discussing all of my other issues and symptoms. He made out a "game plan", so to speak, of what we can try, and if that doesn't work, what the next step(s) are, and wrote things down as we were talking, so I could bring the notes with me. Most importantly, he assured me that how I'm feeling is very real (I keep feeling like other doctors dismiss my symptoms, it's made me feel like I'm a complainer or a hypochondiac!), and that we'll work to find solutions. He made himself very available for questions, emails, phone calls, etc. I was very pleased with his knowledge of celiac and gluten intolerance (he spends time with the DFW celiac support groups), and happy with his manner in which he took the time to listen and discuss things with me. He even checked to make sure I understood everything at the conclusion of the visit, and introduced me to the nurse as well so that I could be familiar with her, and ask her questions as well.

So, my plan - to continue with the gluten-free diet for a while longer, and challenge it, and document my symptoms. Also, he suggested doing the same for lactose/dairy. (Which I've thought about, just didn't want to admit to myself! ). Also going to try some enzymes and such to help with constipation issues.

So, to those of you looking for a doctor in the Dallas area, I think he's a great guy who will not blow you off when you're concerned about how you're feeling, etc. And if it turns out that I am having a reaction to gluten, as I will determine by diet, then I'm okay with just self-diagnosing "gluten intolerance" and going from there.

Thanks to everyone for your help!

[ohsotired]

This doctor sounds like a keeper!!!

I'm so glad it went so well! After you mentioned that what you were likely suffering from was "gluten intolerance" I was shocked to see that he helped you come up with a GAME PLAN! Hang on to this doc for sure!

Keep up with the gluten free diet and see how it goes. He's right about trying a dairy elimination too. It might make a world of difference for you.

It sounds like you've got a pretty good handle on the diet (I read your blog ) but if you need any help, please do post!

If you ever want or need to chat with someone local, just give me a holler! Sometimes it helps to talk to someone going through the same thing - that isn't family. [Or maybe my family is just weird.......LOL]

I'm rooting for ya!

[mushroom]

I am glad you were pleased with your visit and like the doc. His approach does sound reasonable. However, just because you do not have those two particular genes does not mean you do not have celiac. In the rest of the world there are other genes recognized as being celiac genes. Nora would be able to tell you what they were.

[jabberwife]

Regarding the gene thing - yes, I've heard mixed answers on that. I would be most curious as to what genes my father has, as he's the one that has been clinically diagnosed as celiac. My brother and sister were self-diagnosed.

I am more sad about the dairy-free thing than going gluten-free. Which I'm sure would be funny to some. I just love cheese, even if I don't eat a great deal of it. And soy cheese is too processed and just gross, to me at least. <sigh> I'll have to suck it up, huh? It's not the worst thing in the world!

[ang1e0251]

What you have to do with the dairy is decide whether you are lactose intolerant or allergic to casein, the protein in milk. If you're allergic to casein, you will have to avoid all dairy in everything even medicines. If you are lactose intolerant, like me, you have to see how sensitive you are. I can no longer tolerate anything fresh like milk, cottage cheese, yogurt, sour cream or ice cream. But I can tolerate aged cheeses like cheddar and butter.

If you are LI, then after some healing of your intestine, you may be able to add some dairy back in that you might react to right now. Good luck with your diet!

[jabberwife]

Thanks! My sister, once she eliminated gluten and corn from her diet, was able to add dairy products back in. Here's to hoping!

[jabberwife]

Update:

So, after nearly 2 months gluten-free, I decided I would "challenge". My symptoms had not completely disappeared (I still had constipation, doc has suggested to me to take magnesium supplements for it. Still haven't gotten the right dosage down), but have improved. No more brain fog, swelling of hands and feet, tingling/numb hands, severe gas.

Well, Thursday night, I had a moderate amount of gluten. (small roll, a bite or two of bulgur salad, and a bite or two of cake.) Nearly immediately, I felt the swelling feeling in my feet. (not a lot of actual swelling, but I get this weird feeling) Brain fog (which I initially dismissed as the wine I also had...haven't been drinking), and heartburn and lots of gurgling of my stomach as I went to bed. Woke up at 4am with severe gas and big D (sorry for descriptive nature of this post), and again at 6am. Throughout the next day, suffered frequent trips to the bathroom, but not horrible D, just...frequent small amounts. At lunch, had Korean (only wheat was in the soy sauce), but decided to "challenge" again that day, just to be super-sure it was the gluten and not wine, so I ate a bite of a lemon shortbread cookie and a macaroon (which may or may not have been gluten-free). Still had nerve issues that afternoon, tingly hands, and by the time 4pm rolled around, I was nauseas, and when I got home from work I had the worst D I'd ever had, all evening. By then I knew for sure...there was no doubt.

So...at least I have a definitive answer, with or without a doctor's diagnosis. Thankfully, I recovered pretty quickly, this time. I was exhausted all weekend, but am feeling better now. Digestive system still a bit out of whack, but then again, it's always out of whack. I'll work to get it in sync with the magnesium, and if that doesn't work, look for another solution. But I do have some relief knowing that those bad symptoms returned in full force with the introduction of gluten, when they had slowly disappeared while I was on the gluten-free diet.

Having an answer gives me some sense of happiness, even if I won't enjoy breads and cakes the way others do. I am a pretty good cook in the kitchen, and have experimented some with gluten-free baking, and will continue to do so with a renewed enthusiasm!

What does make me wonder - how many people are out there that have the DQ1 genes, but actually were diagnosed as celiac (not self-diagnosed, or gluten intolerant)? My doctor seemed to believe that DQ2 and DQ8 were the only genes, but I find it hard to believe that my father is a clinically diagnosed celiac, and my brother and sister are both gluten intolerant (self-diagnosed), and so am I...and I have no DQ2 or DQ8. I would love to have my father genetically tested to further support my argument, but of course, that costs money. :-) So, tell me...are you, or anyone you know, celiac without DQ2 or DQ8?

Thanks everyone for being supportive and helpful throughout this process!

[ang1e0251]

I'm glad you have some answers to your health and can settle down to healing. The genetic question is a good one. I'm self diagnosed so I don't know for myself but am interested in what other members have discovered. If you don't get many responses, you may want to start a new topic with this issue.