New To Boards--here For My Hubby (long)

[Stacie H.]

Hi!

My name is Stacie. My husband Mark and I live in Katy, TX (suburb of Houston). I'm here because of him. We've been gluten-free for one week now, because we suspect he has Celiac and/or gluten intolerance. He has not been tested.

His dad was diagnosed with Celiac 20+ years ago, but Mark has never shown symptoms until the past year and a half. In July of 2004, he was diagnosed with papillary thyroid cancer. He had his thryoid removed and underwent the irradiated iodine treatment. Since then, the cancer has shown up in lymph nodes in his neck, and he's had a total of 4 surgeries, the last one being this past March. We are now with doctors at MD Anderson Cancer Center, so hopefully in better hands than before!

His GI issues started right after the first surgery. Bloating, diarhea, lost of appetite. At first we chalked it up to stress and the fact that his body had been through so much. But then the intense headaches began. He could only describe them as "deep-seated," and sometimes described them as a burning ring around the top of his head.

In the meantime, his dad has suggested several times that he get tested for Celiac, but Mark refused...and I can't blame him, really. He's been through so much and the last thing he wanted was to see yet ANOTHER specialist!

In March, the surgeons at MDA found that one of his jugular veins had been completely blocked off by a mass in his neck, and was removed (both the vein and the mass). Our first thought was that the shortage of blood to the brain was the cause of the headaches, and they DID go away for some time.

However, just over a week ago, he admitted to me that the headaches were back. At that point, I'd had it. I made an executive decision that we are now gluten free in our home....surprisingly, he agreed!! Yesterday was one week, and luckily, there has been some improvement. However, he's still having headaches, even though he decribes them as being very, very mild. His GI issues have gotten considerably better. He has only had mild cramping, though his stomach is still rumbling a bit, and he is still gassy.

I'm just sooo tired! We're both 36, and while we've been together for almost 8 years, we were only 3 months away from our wedding when he was diagnosed with the cancer. So far our entire married life has been revolving around his health issues. The truth is while we had a beautiful wedding day, he didn't get to enjoy it. We never went on a honeymoon of any kind. And last summer we spent two weeks in Newfoundland, Canada. He's from there, and his parents threw us a second reception. It was so fun, but he was miserable!

Sorry for the pity party!! I just want to know we're going in the right direction! The past few days he's mentioned the mild headaches, and my heart just sinks. Yes, I know it's only been a week....we need to give it more time.

I just wanted to introduce myself and get some feedback.

[CarlaB]

I'm sorry you're going through so much. I can't imagine!

The only thing about going gluten free without testing is that he would not be able to be tested later without getting back on gluten. Most who are sensitive to it would not dream of going on gluten again for a test, which I guess shows they do have a sensitivity to it. There are other tests out there if he decides to be tested later (how I was diagnosed because of inconclusive tests probably due to being wheat free prior to testing), but these tests are not widely accepted by the medical profession. Most of us around here think pretty highly of them though.

I know someone else who has been being treated at MD Anderson for leukemia for four years now. She had a bone marrow transplant and is recovering very well. My dad had his prostate cancer treated there and is doing fine. Your husband is definately at the right place.

It is entirely possible that the cancer was a trigger for activating celiac.

Welcome to the board!

Carla

[mouse]

I assume he is on medication. You need to check that his meds are gluten-free and also any over the counter meds he takes. Welcome to the forum and I am so sorry for all that you and your husband have gone through and are still going through. I think you are heading in the right direction, but it takes time. See if you can get the book "Dangerous Grains" and Dr. Greens new book "Celiac, A Hidden Epidemic". Both of them discuss Cancer, Thyroid, etc. HUGS.

[Ursa Major]

Hi Stacie, and welcome to this board. No need to be sorry, and you're entitled to a pity party once in a while. You've been through a lot, and I hope that you will find some much-needed support here.

It sounds like you made the right decision by going gluten-free. I agree that you need to check Mark's medication for possible gluten, as well as any vitamins he is taking.

Also, make sure all his toiletries (shampoo, conditioner, shaving cream, lotion, toothpaste etc.) are gluten free. You will need to replace your toaster, as it isn't possible to clean it properly (even a crumb can cause a reaction), and the same goes for wooden cutting boards, wooden cooking utensils, plastic strainers and scratched non-stick cookware (stainless steel is better, it can be scrubbed properly).

Very mild headaches are a huge improvement over the ones he used to have. Give it time, they may go away after a while. One week is not much, some people won't show any improvement on the gluten-free diet for up to six months! So, I say he is doing very well.

Don't hesitate to ask any questions at all, as there are no stupid questions around here. And you might want to PM Nini, as she has an invaluable newbie kit she can send you.

[Mongoose]

However, just over a week ago, he admitted to me that the headaches were back. At that point, I'd had it. I made an executive decision that we are now gluten free in our home....surprisingly, he agreed!! Yesterday was one week, and luckily, there has been some improvement. However, he's still having headaches, even though he decribes them as being very, very mild. His GI issues have gotten considerably better. He has only had mild cramping, though his stomach is still rumbling a bit, and he is still gassy.

Hi Stacie!

That's a hard road you two have been on! May your future be brighter!

Migraines do seem to go hand-in-hand with gluten intolerance, but gluten intolerance is not the only cause of headaches / migraines. My own migraines ended with the gluten-free diet, but my companion commented several times over a period of three years that he was disappointed that his headaches didn't stop. Two months ago we went dairy free (finally!!) and now his headaches are gone as well.

Headaches can be a symptom of allergy. I can understand that your husband doesn't want to see another doctor. You might want to consider a home test kit -- someone here might be able to recommend a company, or try going to Google and typing in "home allergy test kit".

As far as the indigestion and gastric symptoms go, an abrupt change in diet such as going gluten-free can, all by itself, contribute somewhat to indigestion. If your husband tolerates either dairy or soy then maybe regularly eating yogurt with active culture would help him.

Best of luck!!

[Anglgrle3]

Welcome! i have only been here a few days, and have only been gluten-free for about a week as well. I live in sugar Land, so if you find any good gluten free resturants around, let me know! i love eating out, but im a little nervous about it!

if you have to deal with hospitals i hold MDA in high regards as ive been being treated there for the last 3 years for cancer. the staff is so nice! I can only imagine how you must feel as my fiance has had to deal with many of the same things with me. you are an amazing woman to stick by him, and i know he is far more thankful for your support than he will ever be able to tell you! i wish you the best of luck with ya'lls new diet and let me know about any exciting bakeries or stores in the area!

[debmidge]

[Quote) "So far our entire married life has been revolving around his health issues. The truth is while we had a beautiful wedding day, he didn't get to enjoy it. We never went on a honeymoon of any kind. And last summer we spent two weeks in Newfoundland, Canada. He's from there, and his parents threw us a second reception. It was so fun, but he was miserable!

Sorry for the pity party!! I just want to know we're going in the right direction! The past few days he's mentioned the mild headaches, and my heart just sinks. Yes, I know it's only been a week....we need to give it more time. "

Stacie: Your story almost runs along almost the same lines (except for the serious cancer) as of me and my husband. I totally empathize and understand as I am living it too (husband was always with gastro symptoms). (note my info below). This is a wonderful board and has given me much information and support. My husband will not use computer so I am in his place.

My husband has a few other health issues and yes, I know how hard it is to get a husband interested in going to another specialist when something new comes up.

I wish you strength to get through this - for both of you. Let us know how you both are doing.

D.

[penguin]

Holy cow, that's a lot for a relationship to go through! You're in good hands at the MD Anderson center. My boss' wife had multiple myleinoma and she's in full remission thanks to those folks and the stem cell treatment she got. It's a great center.

Good luck with all of the gluten-free stuff! I'm glad he's improving some!!

[CarlaB]

You know, my acquaintance had a stem-cell transplant, not bone marrow. They were stem cells harvested from herself when she had been healthy after her first bout with it.

MD Anderson is supposed to be the best!

[Stacie H.]

Thanks everyone!

I have to say that most days are good days, and there are now more good days than bad.

This weekend was very good. Mark decided on Saturday he just wanted to go out and drive around..."just to get out of the house." On top of that, he went with me to my parents' house and actually ATE!! My mom was so tickled...it's been well over a year since he's been there for a meal. He used to just take his car up, visit for a bit, and then come home.

I was disappointed that he chose to eat his hamburger pattie on a bun... but he's a grown man, what could I do? He didn't think one bun would bother him, and I just figured that oh well...we'll find out soon enough! He seemed okay, but I don't know if he really was, or if he just refused to admit it. Either way, he seemed good!

[CarlaB]

I'm glad things are looking up for you. It might be a good idea to get him diagnosed because if he does have celiac like his father, a bun is really bad for him. It's a tough diet, and I would imagine it would be more difficult to stick to it if you weren't convinced it was a problem. If he doesn't want more doc visits, you could use something like Enterolab.