[Ski]

#1062841

You know, as I was reading your post, I was reminded that someone did suggest that there are certain autoimmune diseases that are slightly more likely for GD patients to have, but (do NOT quote me on this) I don’t think celiac was one of them. The fact is that autoimmune diseases are so numerous that it’s almost impossible to make correlations, other than the basic statement that once you have one autoimmune disease, it is slightly more likely that you’ll have another. Not even Graves’ Disease moves directly in families, it’s just autoimmunity, and then it appears that we are very individual in the way that we contract autoimmunity.

[snelsen]

#1062842

Hi Kari,
it is good that you are questioning his thought about celiac disease. I am putting a reliable website in this post for you to read, it is from NIH (National INstitute of Health, the Digestive Disease Division.) You correctly said that there are so many symptoms, that all of can probably find one or two of them in ourselves at various times. If, indeed there is concern about this, I strongly encourage you to go to a gastroenterologist in a digestive disease department. But take it a step at a time.
And, for chronic constipation, one visit to a GI doc would probably help you very much. That is what I did. I now take Miralas ((over the counter.) It does the trick for me. It’s not a laxative. Just a thought for you to consider. In my experience, it was very helpful.
Since you said he ordered labs for celiac disease, it might be interesting for you to compare them with what he ordered.
http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

Ski’s comments are right on. I think there is not much more exploration to learn, she said it all.
shirley

[karilcole]

#1018130

Hi all,
I FINALLY got a great (so far) endo. 1st appt switched me to Armour & is doing a bunch of blood work. I won’t get the blood work done for 6 weeks. He wants to check how he Armour is working out. Anyway, he mentioned Celiac Disease & asked if I was ever tested. I had no idea what it was but he said it would’nt be a suprise if I had another Autoimmune Disease. I told him I have never had any test ran for anything.
When checking it out online, there are SO many "symptoms" of this that everyone has had a few of these "symptoms" at 1 time or the other in their lives. So it is hard for me to look at that to see why he chose that one to test for. Is it more common with ppl with GD then other autoimmune diseases?
The ‘symptoms’ that are maybe not as common as others that stuck out for me are: delay onset of puberty. I was 16 when got the monthly gift. (I actually already had a driver’s license & a ticket before I got it.. LOL) Short in stature (my family is small though) OK to warn you.. TMI, but I only have 1 bowl movement a week or longer (or like now, 2 1/2 weeks) It’s been like this since was really little. My edo asked me about it & said its not norma..lol A longas I can remember I have bee like that & my oldest daughter is the same way. (Most of the places I have read about this on emphasizes on the going ALOT but does say the opposite can happen) Some have mentioned blood work. High or low WBC & high platelets. Mine have been high since ’97 according to my medical records. There are a few more, but I can’t think of them off hand.
I guess I just want to know if this is a more common autoimmune disease with graves? Anyone else diagnosed? Where is a good place to research this. Like I said, it won’t be for 6 weeks b4 I actually get all the blood work done & test for it. I just like to research things. They symptoms are so common, I am thinking not, but we shall see! lol Thanks in advance for any info!
Kari

[Kimberly]

#1062843

Hello – Yes, as Ski said, I have in my notes from the most recent conference that gluten intolerance is often linked to Graves’ Disease. Shirley’s suggestion to visit the NIH site is a great one.

Keep in mind that there is a difference between gluten intolerance and Celiac Disease. Patients with gluten intolerance will feel a reduction in symptoms by maintaining a gluten-free diet. However, patients with Celiac Disease (which, like Graves’, is an autoimmune condition) *must* maintain a gluten-free diet in order to avoid serious damage to the small intestine. In fact, a biopsy of the small intestine to see if there is damage to the villi is considered the “gold standard” in terms of Celiac testing, although there are certain blood tests that can potentially screen for Celiac.

If you do end up going gluten free, there are more and more gluten free products on the market now, which makes the transition a little easier, but it’s still a somewhat high-maintenance lifestyle. Also, I find that the gluten-free substitute foods are often higher in calories than their gluten-containing counterparts — which doesn’t help those of us who are struggling with weight issues. It’s always something! ” title=”Very Happy” />

[snelsen]

#1062844

I sure wouldn’t try to do gluten free uniess you have darn good reasons and evidence to do it! It is a lot of work, you miss a lot of good food you have eaten all of your life. In my experience with other people, it seems to be a common suggestion in the naturopathic and alternative medicine community. Because they have it suggested to them, they try it~ but in almost all the people, they usually stopped it, for they really did not have aggressive GI symptoms to begin with, and they saw no difference after they were on it. It takes a lot of discipline to do gluten free, and for those who pay a big price in how they feel, it is certainly worth it.

And, as Kimberly said, there is a world of difference between celiac and gluten intolerance.
Shirley

[paleblue]

#1062845

Because a little over a week ago, my doctor, a traditional endocrinologist, recommended that I try a gluten free diet to help lower my antibodies because she’s seen a large level of success with this diet lowering thyroid antibody numbers in some of her other patients, I have spent the last week trying to learn as much as possible about the connection between CD (Celiac Disease) and AITD (Autoimmune Thyroid Disease). Believe me, I am one who loves to make my own whole wheat bread, and who lives a great big bowl of Grape Nuts every morning, so I would never want to do this without good cause. I am a runner, and really rely on carbs to support my energy needs. Luckily, I have access to a university library database and have been able to review several articles related to this connection, all of which are scholarly (i.e. peer reviewed).

There seems to be consensus that there is a link between Celiac Disease and Autoimmune Thyroid Disorder (both Graves and Hashimotos). I found a few articles recommending that all patients with AITD should be screened for Celiac Disease. The background information for these studies said that there has been an increased risk of CD in patients with AITD in Europe and vice-versa. I also found a few articles finding a link between AITD and gluten intolerance, and making the same recommendation for screening.

I found another source not related to Pub Med (the medical database) that says that the molecular structure of the protein in gluten is very similar to the molecular structure of the thyroid gland. When gluten enters the body, the theory is that the immune system attacks both the gluten and the thyroid, causing thyroid disease. Also, the point is made that gluten intolerance can happen without causing symptoms in the gut.

Another link between the two was found in a study out of Italy that found that if one has CD, selenium is not absorbed properly, and that the thyroid is “sensitive” to a deficiency of selenium. Therefore, CD can be a trigger for thyroid disease.

Finally, I just happen to have the New York Times bestseller, *Crazy Sexy Diet,* and in this book by Kris Carr, an M.D. mentions a study from The New England Journal of Medicine (I have seen this study referred to a few times over the last week, but can’t find the study.) that documents 55 diseases that are caused (can be caused?) by eating gluten.

Truthfully, I don’t know what to make of this research. But it does seem pretty clear that the research is fairly clearly showing that there is some sort of connection between these two diseases.

I am a mother and work full time, so changing over to a gluten free diet seems nearly impossible. But this week I tried to cut gluten out the best I could. In some ways I feel better—and in other ways I don’t. For example, I think cutting gluten is a process, and it’s my first week, so often I found myself low low low on energy because I wasn’t getting my usual foods and I didn’t know what to eat. I even found myself grabbing some gluten free junk food—m&ms (and there’s some controversy about whether or not m&ms are even gluten free). I do not think it’s healthy at all to eat gluten free junk food, and I’m a vegetarian, which makes it seem really hard to do the gluten free thing. I ended up eating fish this week, which is something I don’t do. The last few days have been better, and I’m finding things that I usually eat that are naturally gluten free—like a salad with black beans on top, and salsa and tomatoes and avocado, and blue corn chips. Also, after reading that people with CD cannot use lotions with gluten and they often have separate peanut butter jars for them and family members who eat gluten, and sometimes they have their own utensils and dinnerware, I wondered just how strict someone w/ AITD should be. There is really not that much information out there yet.

I don’t know if I will keep this up or not. I’ve heard that it can take 3 months to a year of GF eating to see results, and that’s not from a scholarly source. I have also heard that it doesn’t help some people at all. But if I could stop taking the meds, I would stick to this—but that’s just me. I think some would be more comfortable taking meds and not going to all this trouble, which may end up being for nothing. I hope there’s a learning curve, but it can be done. Honestly, I thought the whole "go GF if you have thyroid issues" was an internet thing—something that wasn’t backed by science or traditional doctors, and when my doctor suggested it, I was really surprised.

So I’d be happy to hear what is reported from the conference.

[Kimberly]

#1062846

Hello and thanks for your time and patience in re-submitting your post without the quoted text! Hopefully, we can get some guidelines up that will help to clarify when text from published research can be quoted and when it creates a copyright concern. Until then, we try to err on the side of caution.

The conference didn’t really dig into the issue of Graves’ and gluten intolerance…but it was mentioned in passing that these conditions sometimes occur together.

Personally, I went Gluten free for the better part of a year, and was one of those who did not have success. However, if you are committed to this lifestyle, I would suggest seeking out a local gluten-free bakery – or at least trying to find one that isn’t *too* far away that will ship product. Obviously, it’s better if you can exclusively eat foods that are naturally gluten free. But these people are experts on making tasty gluten-free treats, and it’s a real sanity-saver to be able to enjoy an occasional cookie or English Muffin or bagel. Perhaps you are better in the kitchen than I am, but I went through several attempts to make my own gluten-free bread, and it was pretty much a disaster. ” title=”Confused” />

Take care!

[karilcole]

#1062847

Thanks everyone for the info! The more I learn about GD, the more fascinated I get! I was diagnosed in ’98 and never knew anything about it until about aug of ’10! I was young when diagnosed lol Now in my 30’s, I was tired of feeling like this, so I started researching. It is just amazing everything that is/could be involved when having GD!
I have read CD is common in families. Out of curiosity, I asked the pediatrician IF I do infact have CD, would they recommend my kids getting tested. They told me if my test comes back positive, call & have an appt made to get my kids tested as well. Do any of you have CD & and any of your children?

Does anyone know what the other autoimmune diseases that are ‘common’ with GD? This is all new to me & its hard to do research when I have no idea what to research..LOL AND there are so many contradicting web sites, its hard to know what is correct.
Thank you so much for the info! I keep reading your posts to make sure I didn’t miss anything! )
Kari

[snelsen]

#1062848

Hi.
I tried to do what you have been doing and I took a look at the web. What a mess. I suggest if you continue to search the web a lot, for you to focus on academic websites, the National Institute of Health, plus the excellent references on this site. THere really is a lot of garbage out there.

It sounds like you have a good endo now, so you can check out some of your questions again with him.
Regarding you. In summary, diagnosis in 98, RAI in 99. I don’t think you need to give a moment of thought to your son, his size, or anything else. Totally unrelated to your RAI. The current guidelines on getting pregnant afer RAI are 6 months, and this is based largely on having time to get regulated with your thyroid homone dose so you are in an optimal state of health, as is generally a good idea when conceiving. In other words, conceiving when either hyper or hypo is another stressor on you.
Of course, when a woman has Graves’, she should be followed by endo and OB.

(Of interest, In this country, all babies are checked for hypothyroidism when born. Historically, this was not done, and the result was not good, with mental retardation and a host of other abnormalities. These kids used to be called Cretins.) This still occurs in countries where kids thyroid function is not tested at delivery.

It is true that there is a higher incidence of autoimmune diseases in families when there is a history of an autoimmune disease.
I don’t believe there is any data on which autoimmune diseases are associated with any other one as a second autoimmune disease.

It did not occur to me to have my children "tested" for Graves. I am not sure of the validity of having that done wily nilly and at random. I say that because, like all of use, Graves’ did not appear until it appeared. In other words, for 23 years of my life, I did not have Graves’, and when I was 24, I developed Graves’. Same with the kids. Same with you. You now know the symptoms of hyperthyroidism and hypothyroidism, so if you see symptoms of either one, you can check in with your pediatrician to have him/her run a thyroid panel lab. Having said this, I would depend on a pediatric endocrinologist for further guidance if a child has a thyroid disorder. They know kids and they know the endocrine system.

I tried to look at your posts, maybe I missed it, but I am wondering how you are feeling now. Do you have a lot of symptoms of either hyper or hypo? And-do you have a diagnosis of thyroid eye disease (TED.?) I was not sure about that.
So those are some of my random thoughts to your last post.
Shirley

[lhc11]

#1062849

Hi Kari — in regards to your question about other autoimmune diseases, I don’t know if it’s "common," but I had a flare-up and was diagnosed with autoimmune proctitis (which is basically ulcerative colitis, but limited to the lowest part of the digestive system, the rectum–it is not pleasant!) last fall, about 6 months after being diagnosed with GD. I just did a search and no one else on this board seems to have ever been plagued with it, so again, I don’t think it naturally goes with GD, but it certainly does prove to me that one autoimmune disease often means another. Here’s hoping this is the limit of my collection.

best,
lhc11

[Kimberly]

#1062850

Hello – I don’t know about which autoimmune conditions most commonly occur together…that would certainly make for an interesting research project! However, one presenter at last year’s conference noted that Graves’ is often associated with a family history of Rheumatoid Arthritis, juvenile onset diabetes, Crohn’s Disease, Gluten Intolerance, and Hashimotos Thyroiditis. Another presenter mentioned that thyroid disease in general (not just Graves’) often clusters in families.

[snelsen]

#1062851

Kimberly,
I thought the speaker was giving some examples of familiar autoimmune disorders. Generally, saying that it is the autoimmune presence in families, not emphasizing Graves’ and those specific disorders. I did not think that he was specifying those particular disorders that Graves’ could be documented as being associated with. But I am not sure. That was what I thought he said. Evidence based with studies to back it up, I don’t know that , either. But as I think about it, that is what you said in your post, the general association of autoimmune disorders in a person and in families.

[karilcole]

#1062852

WOW, thanks for all of the informative posts!

All of my family lives far away & I have tried to get some kind of family history from them, but no one seems to know anything. The only family medical history I KNOW of is that my aunt (mom’s sister) has GD & had RAI, my grandma (moms side) died of lymphoma, fatty liver (mom & her sister) & high blood pressure. I was diagnosed with TED around end of ’01. I don’t think my aunt with GD has that though.
My kiddo’s ped suggested I get their thyroid levels checked once a year. I don’t think they are actually looking for graves. I will have to look at their records to see. They thought it was a good idea to give that a look when they are in for their checkups. I never would have even thought to have that done before, but they said it was a good idea with me having thyroid issues. I never had any problems until I gave birth to my 1st munchkin. I got down to 88lbs and didn’t feel right so they checked it out & was concerned how hypER my thyroid was. RAI not long after.
The 1st appt w/ my new endo, he explained the ‘symptoms’ of both hyper & hypo. This may sound odd, but I have some ‘symptoms’ of both, no matter what my TSH is at. (All other thyroid levels in ‘normal’ range)I have for at least a year, but they seem to have gotten worse about the past 6 month. I figure it must be stress or something like that making it seem this way.
As for some of my other posts..hahaha I re-read them. I can totally tell when they were right after an appt w/ my family dr!!! He would throw things out there like ‘pituitary tumor’ or ‘leukemia’ with no real explanation. I would run home to look up what in the world he was even talking about. Which all lead me to some sort of ‘you’re dying’ site..lol I since then have learned what places to stay away from, OH & not see that dr again..LOL He REFUSSED to give me a referral to an endo (& I had to have one). He did nothing to explain the real issues, just liked to bring up things that didn’t apply to me & say ‘have a nice day’. I happened to hear about a free clinic & I went. They were SO helpful & got me a referral that day. Within a few weeks I got great insurance & do not qualify to be seen there anymore.) (

I know I sound like a total nut job & I apologize. lol Now that I have a great endo, I am hoping to be able to ask him questions & not get the run around! This site is the best out there! (& believe me, I have been everywhere in cyber space to get info..HAHAHA) Its nice to know I can always come to this site & know its real ppl w/ real stories to read & even learn from! So thank you everyone for making me feel I am not alone!
Kari

[Bobbi]

#1062853

Just one word of caution. I don’t think it is appropriate to think of celiac disease as "COMMON" with Graves. It is not. It is not one of the listed (and numerous) symptoms. It is not in any of my books. Therefore "common" isn’t the right word. Is it possible for someone with Graves to get celiac disease? No doubt. But that’s different than thinking of it as a common side issue, like TED is. Celiac disease is autoimmune, and it is known that if someone gets one autoimmune disease they are slightly more likely than another person to get a second one. But not hugely more likely. The data I’ve seen is in the low percentages, not high ones.

I know that one of the symptoms of hyperthyroidism is multiple bowel movements a day. But that is not "celiac" disease. Why" Because for the majority of us, it clears up once thyroid hormone levels are controlled back in the normal zone whether or not we stopped gluten products. With true sufferers of celiac disease giving up gluten would be critically necessary.

[paleblue]

#1062854

Yes, I agree with Bobbi–I think I read that 3.4% of people with autoimmune thyroid disease (which includes Hashis) have celiac disease. Statistically that’s quite significant, but in reality, it doesn’t mean "common." Also, I think that a smaller percent of those who have both diseases have Graves as opposed to Hashimotos.

I have still been researching the whole going gluten free to help your thyroid disease recommendation, and felt I must say that I have found long long threads about the issue, and it seems there is a LOT of argument in this area. The hypothyroid sufferers seem to be targeted for this due to some recent books (or maybe just one recent book) on the issue, and there is a lot of disagreement in their community. I was almost scared off from trying to go gluten free after reading these threads–even after my traditional doctor suggested it. So although there are some scholarly articles making the connection between AITD and CD, I felt like I need to add that there’s a good deal of controversy in regards to going gluten free to help your autoimmune thyroid disease. At this point, it all seems confusing. I guess the only thing anyone can do is to try it and see what happens. It seems like it would be an easy study to conduct, so perhaps someone will do so. It is hard hard hard–so I don’t know if I am going to go through with it. I do feel better without eating so much bread though.

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