My Brother

[JerryK]

So my IDENTICAL twin brother, has for a year and a half now, refused to hear me when I tell him about gluten sensitivity. I've given him the whole speil...told him about the big D, the aches, the pains, the depression, the blurred vision all going away when I went gluten-free.

Recently brother was diagnosed with fibromyalgia! He's on Lyrica for pain and has had a couple cortisone shots in his neck.

Now, I've pretty much made gluten-free my lifestyle, and I do it pretty much without even really thinking much about it. I will admit that I fall off the wagon now and then and have been known to eat half a cookie and get away with it. Recently I had a severe backslide and ate a whole carton of glutenated orange chicken.

Man did it taste good! But the next day I was anxious, depressed and I too suddenly had FIBROMYALGIA!!

The problem. I cannot convince my brother that the link between fibro and gluten is real. I cannot convince him that his psychic symptoms are exacerbated by gluten intake. He thinks it's all a "load" no pun intended.

So...does anyone have any links to any hard research showing the gluten/fibro link in all it's glory. I need some real hard data to push in his face, because I'm tired of hearing him whine.

[RiceGuy]

I'm sure I'm not the only one who can identify with your situation. It truly is exasperating to watch someone suffer, all the while refusing to listen to reason. You can hand them all the best info on the planet, showing them how easy it would be for them to just TRY the recommendations. We both know that once they TRY gluten-free, they'll likely not need any further proof.

...And I'm also sure I speak for many when I say: "Oh, how I wish I knew long ago what I know now"

Anyway, here's a link to some articles on the relationship between fibro and Celiac:

https://www.celiac.com/categories/Celiac-Di...Celiac-Disease/

I hope you get through to your brother.

[Phyllis28]

I also hope you get through to you brother.

If you have not already done so suggest a gluten free trail run of one or two weeks. You might even include a little bribery and supply the food for a trail run.

Another option, which includes bribery, would be to take him on vacation where you control the food. Camping for a week out of easy reach of a store might work.

[JerryK]

Funny, because today I've been pounding on him, trying to wear him down. He was telling me today he was feeling kinda crappy...coincidentally he had a large subway sandwich for dinner last night.

I was able to list his symptoms for him. Which he found quite shocking.

[tarnalberry]

there isn't much research that I've seen that suggests a link, and I look up fibro research on pubmed often. there's correlation between fibro and irritable bowel syndrome, but take that inference as far as you want, the research doesn't take it any farther. quite frankly, if he's wanting hard evidence, you're not going to find any to give him.

I might suggest another approach.

perhaps saying, "hey, we've got the same genes, and while some things are different, some are the same. I worry about you not feeling better. will you try this with me, just to humor me? try it, for two weeks, without cheating? come over and I'll cook for you; we'll have leftovers that you can have for lunch, and I'll set you up with good breakfasts and snacks. just for one month, humor me, see if it makes no difference. if there's nothing, no change, after that time, I won't say another word about it. but I can worry a little less that you're insides are being damaged like mine were."

if he says no, remember that he is an adult. he is your brother. just as you want him to respect your decision not to eat gluten, you should respect his decision to eat it, no matter what either of you think about your respective decisions.

trying to wear him down is awfully likely to just make him put his back up and get stubborn about it. I mean, if someone pokes you over and over again in the arm, and doesn't stop, do you start to approve of it?

[RiceGuy]

there isn't much research that I've seen that suggests a link, and I look up fibro research on pubmed often. there's correlation between fibro and irritable bowel syndrome, but take that inference as far as you want, the research doesn't take it any farther.

I'll suggest looking at the articles I linked to in my previous post.

[JerryK]

My mental health professional, who knows my story well, now agrees that my condition does indeed

appear to be exacerbated by gluten ingestion.

I related to him the fact that my brother has been diagnosed with Fibromyalgia and the first thing out of

my docs mouth was "well you know Fibromyalgia has been linked to gluten..right?"

Regardless, when you eat gluten and feel like curling up into a ball for two days, this is an indication that "perhaps I shouldn't eat that". Slowly getting thru to my brother I hope...

I dared him to go off of wheat for two weeks and then eat a big gob. He will be a believer after that.

[Mom23boys]

Funny, because today I've been pounding on him, trying to wear him down. He was telling me today he was feeling kinda crappy...coincidentally he had a large subway sandwich for dinner last night.

I was able to list his symptoms for him. Which he found quite shocking.

Good start!

We are trying to convince hubby's sister. I think you have to just keep presenting the info and those little "mind reading" stunts like you just did.

[tarnalberry]

I should have been more careful in my wording - there aren't studies that I've seen that show any sort of causal relationship. The sources sited on the article above offer plenty of tantalizing evidence that the two conditions may be related. But saying "I see this here" and "I see this there", doesn't mean that here and there are connected. It doesn't mean they're not either, but a dyed-in-the-wool skeptic is probably not going to take that as evidence, so I skipped it.

For your brother's sake, though, Jerry, I hope I'm wrong and he won't ignore it.

[AliB]

A friend in the village has Fibro., as does my husband. I went to see my friend after I stopped gluten as I had seen people's comments on the forum that their Fibro got better when they went gluten-free. She said that interestingly, she actually went gluten-free for a three month period back last year and her Fibro was so much better. Unfortunately she visited her doctor and because she had lost weight and looked a bit on the thin side, he asked what she was doing and when she told him he sternly advised her to re-introduce the Gluten, which she did.

Now, she not only has the Fibro back with a vengeance, but a very persistent and tiring cough that has been with her since December. We had a chat and she said that she may try going back on to the gluten-free again. I did point out that it can take a lot longer than 3 months for the body to sort itself out and perhaps she needs to keep it going longer to give her body a decent chance to heal - I left her thinking about it.

My husband has been doing gluten-free with me since Jan. He still gets tiredness and fatigue at times, but he doesn't seem to be in quite so much pain, so it does look as if it may be benefitting him. He does occasionally allow a bit of gluten to pass through so that might have delayed his progress somewhat but one thing he has really noticed is that he is much more alert and able to concentrate. His 'nerves' are a lot better and he doesn't jump like he used to, and he generally seems to be sleeping better.

Your brother might notice a little difference after a week or two but it may take longer for any real benefit to be noticed. Obviously, in order for it to work properly and to give it a good trial, he would have to be extremely disciplined and careful not to consume any gluten at all. Some seem to think that if they just cut out the main stuff that will do, then when it doesn't work they can discount it, not realising they were still getting gluten, and haven't given it a proper trial at all!

Perhaps there are some out there who could post and give you their personal experiences and you could show your brother how it has helped them.

[Worriedwife]

Another consideration is weight gain. If your brother is at all concerned about his weight, taking the Lyrica could be a problem. It definitely increases the appetite, and if he's eating things he shouldn't be it will only make things worse.

My husband is just stopping this medicine because it hasn't really seemed to help the fibro, and he's gained at least 20 pounds in the last six months.

[RiceGuy]

Well, only you know how you're brother might take it, but seems this thread is quite compelling IMO.

[curlyfries]

I don't know if one month gluten free will be enough for him to see a difference in his fibromyalgia. It's been over 2 months for me and there's been no change as yet. However, there is a big difference with other issues . Hopefully he will see a difference in other ways that will motivate him to stick with it---provided you can get him to try it.

I would like to hear from others as to how long it took their symptoms to improve ( or not) and to what extent. I'm still holding on to hope for myself

Lisa

[Jestgar]

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[Ursa Major]

I was on 50 - 100mg of codeine contin (depending on how bad the pain was) twice a day for five years (it's slow release and lasts for 12 hours) for the terrible fibro pain.

I was very ill from May to October of 2005, with unrelenting watery D and awful stomach cramps after trying a bowel cleanse, which apparently was the last straw and put me over the edge. My backache was getting worse every day, I could hardly move. My doctor told me to eat crackers and drink rice soup, which made it worse, of course.

Finally I figured out that gluten was the problem on October first. That Saturday morning I ate one slice of rye bread, and was doubled over with stomach cramps within a couple of minutes, and had to run for the bathroom within ten minutes, as the bread went right through me.

I finally clued in, went to the computer and put in 'celiac disease', and realized I've had all the symptoms for most of my life. Right there I stopped eating gluten.

By the next day the D stopped cold. The day after that my back started getting better. And within two weeks the fibro pain had nearly disappeared, and I was able to stop taking the codeine!

Unfortunately, after three months the pain started returning, as I was finally absorbing nutrients and my other intolerances showed up. After figuring out those, I've been fine pain wise. It is very rare that I have to take painkillers now, and usually means I ate something I shouldn't have.

So, while it may take a month to make a difference, it is also possible that your brother's fibro symptoms could dramatically improve within days, as that happened to me. Because in my case, the fibro appears to have been completely caused by intolerances (which apparently isn't true for everybody).

[holiday16]

I haven't come across any research that makes an absolute connection, but I can say from personal experience that I am much better off of it. I was diagnosed after going gluten-free because I didn't want to be diagnosed before then since I knew something else was still going on and I didn't want them to just blame it on FM. With the symptoms that were left I was diagnosed with mild FM. However, I had a gluten exposure a year ago that set it off so bad I could hard walk for a couple days and that was just from cross contamination. I would hate to think how bad it would be if I actually took a bite of something with wheat in! I think if I were examined while on gluten the diagnosis would have been more than just mild.

One other thing to ask your brother would be if he has had his Vitamin D checked. It tends to be low in both people with celiac and people with FM. Probably not a coincidence...

I have to keep getting my levels checked and take a supplement or I have all kinds of problems with sleep etc. He should get it checked either way. Just make sure they check the right one. I've had the wrong one checked twice before and it's a hassle to get it done over.

[wowzer]

Hi Jerry, It sounds like he just doesn't want to admit you are right. I have a little sister that is a diagnosed celiac from a year old. Of course, the doctors then told my parents that she would outgrow it. I think she started eating gluten around 13 years old. Eventually she found out that wasn't true. She has a long list of health problems including fibromyalgia. She cheats all of the time. She has to take painkillers to function. I can't believe that she doesn't get what the real problem is. I remember when I was going through itchy blisters and she told me I could have it. I didn't have her symtoms so thought that I was fine. I did finally figure it out and have been gluten free since January 1, 2007. Even my family doctor agrees that my immune system is doing so much better. I did go in today because I pulled a muscle in my chest and back from coughing. I keep trying to tell my Mom, she keeps getting bad itching. I wonder where my sister and I got this from!!! I do hope that brother believes you.

[RiceGuy]

From all the discussions on this board about fibromyalgia, it sounds like I would've been diagnosed with it if I trusted in doctors enough to go to one. I couldn't even walk for over a year. Heck I could barely move.

Now I have none of those pains. Nothing. I took two supplements - methylcobalamin (B12) and magnesium. First was the B12, which helped, but didn't get me very far. Then I added the magnesium, and was on my feet in two weeks! I don't dare stop taking these. While I can't say it would work for everyone, I know it worked for me.

I can only point out that fibro, as with many diseases, has no known root cause. There are only characteristic symptoms. In contrast, we know what causes Celiac. Plus we know it causes deficiencies which lead to other issues. I think it's no wonder why the far eastern cultures are typically much healthier than the west. They don't consume as much wheat as the western world, nor many of the other things Americans do. Sadly, they are becoming more westernized all the time, and along with it the incidence of many diseases is on the rise.