[snelsen April 27, 2012 at 9:33 am Post count: 1909]

#1061157

To Harpy.
A couple responses to your statements. I am responding because your posts appear to the casual reader that you are a formal researcher in this area. I would not want anyone to “learn” that warfarin has anything at all with diabetes. I do believe insulin makes more sense in your analogy.
Please note my correct spelling of the word “warfarin.”

“Like the obese heart patient, telling the doctor to hurry up with his warfrin script, I’m running late for the all you can eat “Burger Bash”, outcome is predictable.”

Your second suggestion:

“So rather than the std old line, what I would like to see is the “smartest guys in the room” to do a proper long term study to show categorically that there is absolutely no connection between Gluten intake & Thyroid disease.
Not too much to ask is it?
Simple 100 Thyroid patients, still take meds, go gluten free healthy diet for 5 years and their progress monitored, end of 5 years all healed/none healed/50% healed whatever, or is funding for preventative measures that don’t have ongoing drug sales unavailable?
Sorry bout the rant, but it does rile me sometimes.”

My response.
Harpy, there is a lot for you to learn about doing a long term proper study.
Again, I am concerned that the readers of this site might view you as an academic expert, rather than, like the rest of us, you are stating your opinion. But when your opinion kinda reflects the “answer” to a topic, then I need to respond. Your proposal is simplistic, and that is not how we learn from a clinical study. it would not be valid. It doesn’t even have a control group. You seem like an intelligent guy, really ready to do learn, so I suggest you take two or three years of research methods classes. After you learn how to design a well controlled, evidence based, well designed clinical study, you can write a proposal, and find a principal investigator to conduct it.

To do a clinical study
1. A population size of 100 is very small.
2. The study you propose has no control group
3. You begin with a hypothesis
4. There is so much to control in the study. Age, gender, health history, etc etc.

I am not an expert, either. But I have done one clinical study in the area of cardiology. Guess that is why I know how challenging and difficult it is.
Shirley

[Harpy April 28, 2012 at 12:22 am Post count: 184]

#1061158

Snelson
Yes my spelling is out sometimes, probably because I am juggling with three versions of the English language (US, UK & Aus), reading too much and thinking faster than I can write. I didn’t see that there was a comprehension issue with that particular spelling mistake and have noted plenty of minor spelling mistakes elswhere on the forum and only feel the need to point them out if there is a risk of misunderstanding, but thanks for pointing it out anyway.
I did not mention diabetes, Erica did twice, Bobbi did once, you in your post and now I’ve just written it.
My reference was to:

Quote:

obese heart patient

,
You may have made the association that Obesity may have as a symptom or causal factor in Type 2 Diabetes, but obesity is also common with heart disease patients and that was what my reference of warfarin was to.
I would have thought the colour of my language would have been a major flag that it was not a formal research presentation, but I do appreciate your comment that it may be misconstrued under certain circumstances, so to that end I have included an appropriate disclaimer in my signature so everyone can see that what I write is purely my opinion.
I have never prepared a formal clinical trial, but I do understand that there is a lot more to controlled double blind study than just gathering a number of indiuviduals together and giving them a diet regimen to follow. If I was to prepare one it would not be presented as three lines in a forum post it would be a 50 page document to give a detailed explanation of what the aims are, how it will be conducted and what the expected outcomes would be, I’m sure people already think my posts are too wordy without going out to 50 pages.
Not all scientific studies are done to that full degree of rigour as it is very expensive to conduct, many scientific trials are done on the basis of a feasability study in a simple form as I sugested, they are not expected to be absolutely conclusive on wheteher the factor at question is responsible or not, merely to show scientifically that there is enough evidence to warrant a full blown study and that further investigation is required.
So now that we have discussed the technicalities of the discussion, like in another post where I was corrected for the quality of some of the links posted, but no one seems to want to deal with the question of the influence of our environment on the presentation of GD (& other autoimmune diseases).

In my opinion there are a number of environmental factors which have enough circumstantial evidence around their relationship to GD to warrant further research.
Is their any conclusive scientific evidence to show that environment plays absolutely no role in the presentation of GD, if so I would like to see it so I don’t waste my time following this path if my time could be spent more valuably elswhere?

[paleblue April 28, 2012 at 4:42 pm Post count: 18]

#1061159

I thought I would update my gluten free situation. First, let me say I am in no way saying that going gluten free will heal Graves Disease. I am just one person in a sea of many–and in fact, I am still skeptical.

I am still gluten free and have been so since January of 2011–so I guess I’ve been gluten free about 15+ months if I am counting correctly. My antibodies, according to my doctor, have been stable for a year, but I am still taking 1/4 a 5 g pill of methimazole every other day. We were both scared to take me off of it over the winter b/c I always flare in the winter–especially after a cold. It seems like when the immune system has to rev up to fight something, mine doesn’t know when to stop. Someone did suggest I test vitamin d this winter, and it was indeed low, so I did start supplementing. I am not a big supplement person, so I didn’t really want to do so, as it seems now suddenly everyone is vitamin D deficient, but that’s another story.

This winter I did not flare, and I have had colds twice. My TSH was just a tad low last visit (which is odd b/c antibodies still were normal, but perhaps there is a lag effect), so my endo kept me on my same dose. I just knew I was headed for a flare up, but there wasn’t one.

If my numbers look good in May, we may take me off the meds and see what happens.

I know all of this means very little–except that I have seen no personal stories of this happening, and if it does work, one story will be somewhere. I did read a study that said that 25% of the graves participants who went GF did achieve remission for GD, but that it doesn’t help everyone–but that is one study. I think it will take years and years to establish causation, and that may never happen.

My take is, if you are up for it, you can always try it–but it’s a lot of work–or for me it has been. I miss making whole wheat breads and eating Grape Nuts, etc. Also, I worry b/c my breads and cereals are not enriched with vitamins. But if it does work, I will be so thankful.

Honestly, we may have very little to do with this disease. We like to think we are in control, or can do something, but the body is a mystery. It’s okay for the body to be a mystery, as so much about this life is. We just do the best we can I think. I’ll keep the story updated though.

[Harpy April 28, 2012 at 7:53 pm Post count: 184]

#1061160

Congrats
Allways great to hear a positive story, hope everything continues in a positive direction, read somewhere one GD patient, their signature was, “Two steps forward, one step back”
There will often be little hiccups on the way, but that’s really no different to everyones life is it.
Good luck with everything, and yes, please do stay in touch.

[Carito71 August 14, 2012 at 1:28 pm Post count: 333]

#1061161

Hello Erica,

I’m a Celiac disease (CD) patient and a GD patient. I was diagnosed with CD before I was diagnosed with GD. For years I had really bad stomach problems and many many tests were done. Finally a Dr. mentioned Celiac and ran some tests. This was around 2005. I was told all kinds of things before. I was even told I probably had Lupus but after two Rheumatologists ran tests, it was ruled out that I didn’t. Anyway, finding out that I had CD was a blessing. I felt so sick before that I’m so glad I’m gluten free today. I’m so used to it that to me it is just normal day to day way of eating. People get so amazed about what I tell them I don’t eat it … is funny. The people around me, coworkers, friends, etc., know now about making sure to include gluten free items when they invite me to a party.

Being gluten free is so easy now a days. When I started the diet I had to search for things on line and order that way. Now I just go to my local stores and they have what I want.

One thing I do have to mention is that when I first started the gluten free diet, the first thing I removed was bread and pizza. Not long after starting my gluten free diet I was still very sick. I went to see an immunologist (he passed away 3 years ago), who encouraged the gluten free diet but who also told me that I was allergic to yeast. Now, bread contains yeast. I was recommended to go yeast free as well, which I did. So I went gluten free and yeast free almost at the same time. Yeast is something that we eat a lot as well. I guess what I’m trying to say is that some of the benefits of being gluten free might come from more than being gluten free. They might also come from being yeast free. My immunologist was doing research on this area. He believed that yeast could overgrow in our gut and then spread to other organs, even including the brain. He explained that one way this could happen was from taking antibiotics. We know that antibiotics will kill the good bacteria in our gut and this could allow the over growth of yeast. I have to say that I felt a lot better after his treatment and that the ANA that had come back positive previously (reason I was told I might have Lupus) changed to negative. I haven’t had it tested recently but now that I’ve been diagnosed with GD I wonder if it is back to being positive. I was recently diagnosed with GD (in June) and I have to say that it could have been yeast related. I had been yeast free for all this time until March when I had “gluten free” pizza at a restaurant. The pizza had yeast and I knew it but I didn’t think it would harm me b/c I had been feeling good for so many years. I ate there 3 times that month. I said that it could have been related because I also went through some hormone therapy to get pregnant and that could have done it too. Who knows. It could have been a combination of the two causing stress to my body.

Being Gluten free (GF) might not fix my GD but it might help me from having to get as sick as I would if I wasn’t GF. People can have an allergy to it or just be sensitive to it. I’ve read that sometimes people who don’t have CD and try the GF diet feel better. It doesn’t hurt to try it. We have so many options out there to make sure we supplement ourselves well. As for me, being GF helps with absorption of what I need and keeps me, hopefully, from getting intestinal cancer (another risk with CD).

Good article!!! Please keep sharing the information and learning. Only if we intelligently inform ourselves can we make a change. You mentioned the medical library. Are you a med student?

You might find this interesting:
http://www.celiaccentral.org/thyroid/

Caro

[Author]

Posts