[Carito71 July 11, 2012 at 2:38 pm Post count: 333]

#1059195

I was thinking earlier today about GD and how it is autoimmune related. It affects the thyroid and we see an Endocrinologist for it but it also affects other parts of our bodies because it is autoimmune related. Having said that, why don’t we see an immunologist to help us treat the autoimmune problem?

Does anyone see an immunologist?

The reason I’m asking is because about 7 years ago I developed a rash on my face after eating a lot of chocolate cake and other desserts. I went to see an allergist who ran labs. She ran ANA labs, which came back elevated. She assumed I had Lupus so I consulted two Rheumatologists. They ran labs and they both told me I did not. About a year later I felt very very sick. I was very fatigued and lost a lot of weight. My primary Dr. ran labs and everything was “normal”. She checked me for diabetes and that too was normal. She told me that there was nothing wrong with me but to drink more liquids b/c my BP was low. I don’t remember if she ran FT3 and FT4 though. I didn’t think I was ever going to get thyroid problems and at the time I didn’t know much about labs.

I went to see another primary Dr. who laughed at me and prescribed antidepressants. I never saw him again.

I saw a 3rd Dr. who told me I had Celiac Disease.

I made some changes in my life. I started on a Gluten Free diet, I quit my very stressful job and went back to school. In between quitting my job and going back to school, my husband took me to an immunologist. He ran some tests and told me that I was allergic to yeast. I had just been diagnosed with Celiac disease and I had started to follow a Gluten Free diet. Because he told me I was allergic to yeast I also went on a Yeast Free diet.
He gave me shots for a period of a year to a year 1/2. When he retested my ANA it was no longer positive/elevated. I had it tested again later on by another Dr and again it was negative. I stopped treatment but by the time I did, I was doing better.

So, having said all of the above. I was thinking that maybe seeing an immunologist should also be part of our treatment.

What are your opinions? Maybe this has been addressed before but I haven’t read anything about it.

I want to mention that I was on a yeast free diet all the way up to March of this year when I started eating it again. I have stopped again in hopes that it makes my GD less symptomatic. I was told I have GD just few weeks ago.

Caro

[adenure July 11, 2012 at 3:36 pm Post count: 491]

#1172865

I think immunologists deal more with allergies & asthma. I just don’t think any immunologist would really have the training, education, knowledge or experience dealing with Graves Disease patients, so they probably wouldn’t have too much input. As it is, some endocrinologists are more up to date on diabetes issues than Graves, and endocrinology is more where our issues lie.

I know that the way we eat can influence our health in a positive or negative way, but I don’t think any type of diet will have a drastic effect on improving Graves or hyperthyroidism. We can limit iodine, but no diet or food will cure hyperthyroidism. I’ve seen the claims online, and I think it is unfortunate as it does a disservice to people and could potentially lead people down a dangerous path. Truth is, more fruits, veggies, nuts, whole grains, and healthy fats are what EVERYBODY should be eating- no matter if you’re healthy or sick. The more “whole” the food the better. I’m even trying to eat that sprouted bread that spoils within a few days of purchase. I’ve been a healthy eater for awhile, but I’m trying to eat even better now that I’m
on the path to being well again. I want to be as healthy as I can.

Alexis

[KimberlyOnline Facilitator July 11, 2012 at 3:40 pm Post count: 4294]

#1172866

Hello – Patients who are diagnosed with one autoimmune disease are statistically more likely than the rest of the population to be diagnosed with an additional condition.

A gluten-free lifestyle can be very high-maintenance (I tried it for a few months), but at least *one* good thing about Celiac is that it’s the only autoimmune condition I’m aware of that has a 100% natural, 100% effective treatment option.

I’ve heard from a couple of patients over the years who have seen an immunologist, but for the most part, we are treated by individual specialists.

It sure would make sense if we could have *one* doctor treating all of our various ailments, but it would be difficult for one doc to have the expertise to deal with *all* of the things that can go wrong with autoimmune diseases.

However, some endos who are really involved will end up coordinating care with other specialists, including ophthalmologists and dermatologists.

Perhaps as researchers get a better handle on why the autoimmune system can start attacking healthy tissues — and how to interrupt this process — you might see more patients shifting to this type of approach.

[Carito71 July 11, 2012 at 5:13 pm Post count: 333]

#1172867

Hello Kimberly and Alexis,

Alexis, how are you doing?
I think you are right about immunologists … allergies and asthma.

The immunologist I saw has passed away but he was really into the immune system and things that destroy it.

Eating healthy is definitely necessary. In my case, Celiac disease can cause GI cancer if I eat glutens so I just stay away from them. I’ve learned to eat pretty well with it though. There are all kinds of gluten free products now available but if I stick to vegetables, fruits, nuts, beans, fish, meat, milk, eggs I’m considered to be gluten free I stay away from breads but I make my own bread, pizza, pancakes. I do buy gluten free waffles at the store though. When I first started I didn’t have all the choices I have now. Notice that what I eat is practically yeast free as well. When I make my bread I don’t use yeast, I use baking soda.

The immune system seems to be everything. So many diseases related to immune problems. Lupus for example. They see a Rheumatologist. The Rheumatologist is someone who deals with autoimmune diseases but I wonder if they work with GD patients.

I think I have read in other posts, don’t know where, that stopping the Rx early decreases remission. The endocrinologist’s goal is to get the #s to normal range but he/she doesn’t worry about the autoimmune part or do they?

Kimberly, it sure would be nice to have a Dr. who would understand the whole picture and could coordinate treatment accordingly. But I’m thinking if the problem is the immune system, then maybe that is the key. Maybe the Dr. doesn’t need to know all the details of the disease if he/she understands the immune system.

As for Celiac D., I’ve know people who have it and have all kinds of problems. One lady told me “its like once you get one autoimmune problem, you get a whole bunch of them” He daughter suffers from Celiac D. and has several other problems that have recently come up. And now me too … I started with Celiac and now I’m here …

Kimberly, when you were on the gluten free diet, did you feel better? I certainly do. My stomach used to be such a problem for many years before I went on the diet.

My hope is that one day we can figure out how to heal the immune system and that way cure/avoid autoimmune diseases. Call me a dreamer but we also dream about a cure for cancer.

Thank Alexis and Kimberly for your messages

[Harpy July 11, 2012 at 8:34 pm Post count: 184]

#1172868

Carito71
I agree with you, it would be great if we could have a doctor that could do it all, but with the way our health systems are structured, underfunded in both time & money, that aint happening any time soon and to some degree that would also remove ownership from the patient, though not many want to own GD.
I think it is important for the individual to re-aquaint themselves with their bodies and become more informed on their own disease, this way they can be involved in an active partnership, with their care providors, in their own healing process.
On the flip side I think doctors need to be more respectful of their patients and the valuable contribution they can make to the process if this relationship is nurtured.
As to who is best equipped to treat your condition, at this point in time it is most likely still the endochronologist as they are most knowledgable of the thyroid behaviour and this is primary symptoms that need to be dealt with. But as you say this still leaves the underlying autoimmune condition to be dealt with and many Endo’s seem to disregard this fact entirely. As for the cause of the autoimmune response I feel that although every individual may have a slightly different trigger, but I see it more as a set of conditions, so the final trigger is more like “the straw that broke the camels back”. Some of those conditions are genetics, diet, stress, toxins etc. and the more of these we can improve, the better we place our bodies in a position to heal themselves.
I spend quite a bit of time scouting around on MS & other autoimmune groups and they all seem to come back to the same types disease triggers and there is a variety of conditions and some cancers that are being re assessed as autoimmune conditions, so the autoimmune disease family is growing day by day.
Glad to hear your Coeliacs is under control, I decided to cut out Gluten & grains recently for health improvement reasons and found that trying to substitute was the hardest part i.e. Gluten free pasta, bread etc., so I took the other approach, a paradigm shift in redefining what food and meals were. This means bread & pasta is no longer part of my perception of what a meal is, this removes a lot of the time, effort & cost for me and I have been replacing these with a whole new set of meal structures and developing new favorites to help retrain those “cravings neurons”.
I’ts all part of our journey, stand tall, you get the best view that way.

[KimberlyOnline Facilitator July 12, 2012 at 10:17 am Post count: 4294]

#1172869

Carito71 wrote:

But I’m thinking if the problem is the immune system, then maybe that is the key. Maybe the Dr. doesn’t need to know all the details of the disease if he/she understands the immune system.

The issue, though, is that even if you visited the most knowledgeable immunologist in the entire world, they still don’t know how to shut off *only* the part of the immune system that is misfiring and attacking healthy tissues. For patients whose autoimmune conditions are causing extremely serious complications that are life-threatening and/or keeping them from accomplishing simple daily activities, there are some really powerful drugs out there that can knock out the *entire* immune system. But this comes at a price. Because the entire immune system becomes compromised, something as simple as a cold can turn very serious and end up requiring a hospital stay. So for now, the treatment for most autoimmune conditions, including Graves’, is to minimize the “collateral damage” caused by the immune system’s attack. And to fix that “collateral damage”, you really need a specialist: endocrinologist, ophthalmologist, dermatologist, etc..

Personally, I didn’t see a huge difference from cutting out gluten. However, the reason I tried to go gluten-free was that I was told by a doctor that I had a “sensitivity” to gluten (along with dairy, eggs, and a few other items). A “sensitivity” is a different situation from Celiac, where you can end up with very severe medical consequences from consuming gluten.

Take care!

[PolishTym July 14, 2012 at 8:42 pm Post count: 67]

#1172870

Cutting out gluten from my diet helped me a lot. A primary physician I had is an internal medicine doc (shortage of general pracs), and he didn’t believe my Graves’ was tied to stomach problems even though they kicked up around the same time. He refused to have me tested for Celiac disease.

My new primary is open to trying different things and has encouraged my decision to test for different food allergies/sensitivities. But the doctors most open to the possibility of a relationship have been my surgeon and allergist. My allergist thinks most doctors ignore the immunology issues. Maybe it is a disciplinary thing, or maybe not. The people in my allergist’s office were more concerned about my weight loss than a previous doctor who missed the Graves’ (There has been a revolving door of docs around here.). So I am thankful for my allergist’s office!

[Carito71 July 16, 2012 at 4:29 pm Post count: 333]

#1172871

Hello Harpy,

Thank you for reading me and for your advice. I’m thinking about getting acupuncture to see if I can reduce my stress levels. I don’t feel stress but GD itself is stressful. I have been very stressed in the past (career) and I made changes there to the point that I don’t get stress from that anymore.

My main problems seem to be allergies. There was a time, before the Celiac diagnosis, that I was always sick of my stomach. I had tones of GI tests done and none would find a problem until finally a Dr., who knew about Celiac, ran the correct tests. It took time to feel a difference but I’m doing good now. My allergies though continue to be a problem. I’m allergic to pollens, mold, dust, smoke, perfumes, etc …… I feel like a should live in a bubble … lol This allergies affect my sinuses and ears. I think this might have been a big trigger this spring.

Yes, you are right. Learning as much as possible is necessary with GD. I’ve been trying to research more about the immune part of it. I found something that talked about T helper 2 cells possible having something to due with GD.

Have you ever come across anything having to due with yeast allergies. My immunologist that I mentioned above was big on that. He would say that antibiotics intake would of course kill good bacteria and yeast would grow then since the good bacteria would not be there anymore to compete with it. When I was under his care he had me on a yeast free diet and would recommend minimizing sugar which makes yeast grow. He would say that the yeast would affect all organs in our body and that breaking spores would create toxins that were harmful. He passed away though.

The best with your new diet.

“I’ts all part of our journey, stand tall, you get the best view that way.” … so true.

Thank you,
Caro

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