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Texas Celiac

I'm New And Have Celiac And Graves Disease

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This is my first post and I am very confused about the gluten-free diet and how to get started. I feel overwhelmed by the amount of information, the foods I cannot eat, fatigue, and weight loss. I found out 5 years ago that I have Graves disease and was treated with some sort of radioactive pill (I cannot remember the name of it off-hand). Then 2 years later I noticed water-filled blisters on my elbows and knees. I lived with this for 2 more years before I found out that it was DH and that I probably had Celiac Disease. I was tested for Celiac Disease 6 weeks ago and found out that I do indeed have it.

Does anyone else have Celiac Disease and thyroid problems also?

Any advice on how to get started on a gluten-free diet. I mean there are so many questions. I read labels and it looks like I can have ice cream, yogurt, cheese, even chocolate candy. However I am new to this and I have read that gluten has many forms and is a hidden ingredient. I am soooo confused. I just want to start feeling better. I feel so frail and weak.

Texas Celiac

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Hi Texas Celiac and welcome!

I'm sorry that you are having such a hard time right now! I do not have thyroid problems, but I know it is pretty common to have both celiac disease and thyroid problems....soooo I'm sure someone will chime in soon about that aspect of it.

As far as the diet goes....it sounds like you (as like most of the people here) were sent on your way with a diagnosis and no guidence at all :rolleyes: .....Dr.'s just don't know how hard it can be. I would suggest asking for a referal to a nutritionist to get you started. They can help you set up daily dietary plans, then as you learn more about it, you can add a little more to your diet slowly.

For now, start off simple. There are sooooo many products out there with gluten. Don't chance it with processed foods. I would eat plain rice/potatoes for starch, fresh veggies (don't add seasoning mixes or anything) and fruit, and plain meat.

A few things to keep in mind for now:

Kraft foods and General Mills ALWAYS lists any gluten in their ingredient list. For instance, some companies will list modified food starch as an ingredient and that could or could not mean wheat. If Kraft or General Mills lists Modified food starch and it contains wheat they will clearly say that it is wheat. They put it in the parentesis at the end ( i.e. Modified Food Starch (Wheat),......)

Some medications contain gluten, so ask your Doctor about anything you are currently taking. You can't trust the Dr. to know to check.....*sigh*

Call the company about ANYTHING you aren't sure about!! They will probably know.

I hope this was some help......oh yeah.....the best advice I can give is to ask anything you want here! Everybody is very knowlegeable and hepful! ;)

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Hi,

Welcome to the board! I also have Graves Disease. I had the radioactive iodine 3 years ago. It was around that same time that I was experiencing symptoms I would later find out were related to gluten intolerance. I was never officially diagnosed with Celiac so not sure if I have it or not. I've been gluten free for a year now. It will definately get better for you...this forum is the best resource for learning the ins and outs of the diet. It may seem overwhelming at first but it gets easier and before you know it it'll be second nature.

Dont be afraid to ask lots of questions. :)

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Welcome to the board!!!!Fellow Texan!!!!! Where are you at? I'm in Dallas.

Now for the diet, you can get the forbidden foods list from this site over on the menu- I think it's under site index... Any way it's a list of things we can't have, and the names of things that contain gluten in a hidden fashion! There was already good advice about the diet. It's best to start simple and as you get used to and adjust to the diet, you can start adding in things you figure out are indeed gluten free. I think Nini has a folder for the beginner gluten free person!

Fieel free to ask anything here! We're all here to support one another!

Lollie

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I too had Graves disease and RAI, then almost 20 years later discovered my gluten senisitivty. www.celiac.com is a great resource. Print out the safe and forbidden list. It is very good.

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I have been so anxious to get back to my computer and reply to all of your posts. I have 4 children and two of them are toddlers (one with special needs). So needless to say I don't get a lot of alone time.

Thank you so much for making me feel welcome. I feel better today after reading your posts and knowing that some of you also have Graves disease as well as me. I don't feel so alone.

One of the hardest things for me is giving up some of the foods I love the most. Such as pizza and deli sandwiches!! Or having a beer every now and then. Food is such a powerful substance and comforting too.

Can you tell me what "processed foods" are. I know the obvious ones, such as hot dogs and bologna.

Also, you mentioned I should stay away from seasonings. I guess that means Seasoning Salt, chili powder, garlic salt and powder? Do all of these "over-the-counter" spices contain gluten?

You were right about me being diagnosed with celiac disease and then being sent on my way. I was told that I have celiac disease and to adhere to a gluten-free diet and there was no need for a follow-up. Okay, easier said than done.

Thank you for your encouragement and advice. I am really excited that I found this forum!!!

I really want to hear others advice and experiences with Celiac, DH or Graves. I think this enlightens all of us.

Oh, and Lollie, I am from Fort Worth. So we are neighbors!!

Texas Celiac

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Texac Celiac and Nancy,

I've alway wonered about this. I'm sure you could answer this one Nancy.

Since we've all had RAI does this mean we no longer have Graves? Technically hasnt it been treated? Can it still harm us in any way?

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Wow TC! I'm surprised you ever get a minute to yourself with a crowd like that! :lol:

Over time you will get used to being gluten free. You will learn how to substitute your comfort foods for things that you CAN have. Did you know they actually make gluten-free beer too! :D So, not all hope is lost! New Gris is I believe the most popular gluten-free beer brand right now....so treat yourself and go pick some up!!

Processed food is anything that is not the whole pure food.....if it didn't grow out of the ground in that state, or come off the animal in that state than it is processed. I know that sounds REALLY restrictive, but I just suggested that for now because it's an easy way to know what does NOT contain gluten. There are processed foods that are gluten free, but sometimes it's a puzzle to figure out which ones they are! A nutritionist could help teach you to decipher ingredience lists and what key words you should watch out for. Some obviously are never ok....wheat, rye, barley, oats, malt, malt flavoring, semolina, etc., but some are more vague. Modified food starch, natural flavoring, artificial flavoring, and spices are some examples of ingredients that may or may not mean gluten. If you see these ingredients you need to call the company and ask them if the product is gluten-free.

The same goes for spices.....especially spice mixes. Like if it's labled just as Grilled Chicken Spices. Who knows what's in that!!

I think the hardest thing for me in the beginning was getting used to watching for ANYTHING that you put in your mouth. You should even check your cosmetics. Shampoo, conditioner, and lipsticks are things people find out months later are making them sick.

That's why for right now it might be best to limit your diet quite a bit, so you can get used to a few things at a time. Eventually though, you will know exactly what you can and can't have! I've been gluten free for 2 years and when I go to the grocery store I rarely have to call for information on anything.....I just know! It gets a lot easier! And in the long run you don't really end up having to give up much of your comfort foods....you just make them differently!! :D

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Wow, I think I will enlist the help of a nutritionist for info on hidden sources of gluten. I would love the get good gluten-free recipes from people who post on this forum.

Rachel, Nancy may have more information on Graves, but my endocrinologist told me that the RAI only treated the thyroid portion of Graves and that I will always have Graves disease. I know that Graves can affect your eyes but I don't know what else it affects. If anyone knows, I sure would like to know.

Texas Celiac

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Wow, I think I will enlist the help of a nutritionist for info on hidden sources of gluten. I would love the get good gluten-free recipes from people who post on this forum.

Rachel, Nancy may have more information on Graves, but my endocrinologist told me that the RAI only treated the thyroid portion of Graves and that I will always have Graves disease. I know that Graves can affect your eyes but I don't know what else it affects. If anyone knows, I sure would like to know.

Texas Celiac

I don't know. I've kind of wondered if anything else might be happening since I've had my thyroid nuked. I didn't get the eye swelling at all. I do know that Graves can go into remission and never be a problem again.

I guess we should look on the Internet and see what other folks say.

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Hello all! I too have Graves Disease along with the Celiac. Had RAI in 2000, been on Levoxyl ever since. The Celiac was dx just in 10/05 by blood tests and biopsy. I can relate with the confusion of figuring out this whole diet thing. I learn something new about this disease everyday. I am still dealing with quite a bit of fatigue and tummy trouble. Have good days and then there are the bad too. I do have a lot of support from my family and now from you all out there! This site is really great for advice on all kinds of things.

Sis

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Oh, and Lollie, I am from Fort Worth. So we are neighbors!!

Texas Celiac

Oh how cool!!!!!!! Maybe we could meet up at a whole foods! I can show you all the good stuff I have found there!!!!

Feel free to PM me and maybe we can work something out, or at least I can tell you all the stuff I've found in our area!!!

Lollie

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Hi sis,

I have been really having a problem with fatigue. I could sleep for more than 12 hours if I could. So I went to my PCP and had blood drawn. They found out that my TSH is 25. Normal would be .04 to 4.0. So it is way off. I figured the fatigue was due to the high TSH but maybe it is also the Celiac. Does anyone know?

Texas Celiac

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I figured the fatigue was due to the high TSH but maybe it is also the Celiac. Does anyone know?

Texas Celiac

After RAI my TSH went to 25.5 so I figured my fatigue and other symptoms were due to that but it persisted loooong after my TSH was normal...in fact it got worse. As soon as I changed my diet the fatigue improved dramatically.

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I have had a terrible time keeping my thyroid levels normal. My TSH was up, then down, and then up again, so I have had to keep adjusting my medication dosages. I go back to have more blood work on Tuesday because I really feel like my levels are off again. I think it is a combination of the thyroid and celiac that contribute to the extreme fatigue, at least in my case.

Sis

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Wow it's so interesting to hear about others' experiences with Graves and celiac! I was diagnosed with Graves in November of 2004 after having all the symptoms for a while (tremors, heart issues, etc). I was put on tapazole (anti-thyroid meds) for a couple months, then went really hypothyroid for a while because my endocrinologist had no idea how to treat Graves and seriously overmedicated me. :(

After stopping the tapazole, my thyroid levels got back into the normal range, but I still felt awful all the time and couldn't figure out why... Just sooo fatigued. Then a couple months ago I finally found a wonderful new doctor who discovered that I had celiac. She feels VERY strongly that there is a definite connection between Graves and celiac, and most other autoimmune disorders for that matter.

My thyroid levels are normal now and I've been gluten free since February... feeling better every day. :)

-Sara-

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Wow, Jennifer

That is so cool that you are from Mineral Wells and Lollie is in Dallas. I never knew there were so many people with Celiac. I think I read somewhere that 1 in 122 people have Celiac. Maybe it is more than that.

Sara, I agree with you and your doctor. I think there is a definite link between Celiac and Graves. Probably other autoimmune diseases as well. I am glad you are feeling better. I hope that as I start on my gluten-free diet that I will start to have more energy and quit losing weight.

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Texas Celiac -- Welcome to your new home away from home!

I agree with everyone here. And I also have a thyroid problem. At first my endo doc wrote in my chart I was borderling-hyperthyroid, then she charted that I had Graves...then I developed a HOT NODUEL on my hyperactive thyroid. I also had the RAI treatment and am in the same situation as many here. I went from hyper to hypo. Get yourself a couple of books, if you want to know which ones to buy I'll post them here for you.

I would like to warn you of somethings I wish somebody had told me... Now I beat my drum about this, some don't want to listen (denial) but as you remove gluten from your diet, you must also remove SOY. Soy is poison, some don't believe me but, they find out for themselves later the hard way. Doctors and the food industry won't tell you they make millions when we are sick. SOY was the cause of my thyroid problem. Soy is in everything, gum, body creams, beauty products, it's in coffee, tea... the list is too long.

You must read every label -- avoid things like modifed food starch, any kind of starch, natural flavoing, artificial flavoring, veggie broth (in tuna packs and cans) and the list goes on...

A good number of us have developed secondary food allergies or intolerances like I have listed below in my profile. Like night shade and legumes (legumes include soy). I lived gluten & dairy free for about 4 or 5 years and then developed the thyroid problem and the other food allergies.

You might want to start off very basic, then introduce foods back into your diet and see if you can tolerate them. You might have developed many and not know it. And remember some foods are good to speed up the thyroid and others are good to slow it down. I must admit to you it was all very confusing to me. It had my head spinning trying to figure it out when my endo doc was clueless.

Also, beware of binders in your medication. I have a big problem with them, they put corn, dairy and other hidden things. I go to a compounding pharmacist. I have also discovered that many of the main stream thyroid med are cross contaminated with gluten. The companies buys their dye from another comany that puts gluten in their pills, they run the dyes on the same lines. And so we get cross contamination and no one tells us these things. Levoxyl is one of them. I was able to get answers when I called the drug companies and aske the right questions. A compounding pharmacist is the safest way...

Plus there was a recall and a class action law suit with the thyroid companies a few years ago. I honestly believe they haven't worked out their problems yet. And is the reason the thyroid medication that is out there is UN-STABLE and could be the reason none of us get a balanced dose in our system.

Weight loss (or for some weight gain) is part of these disease(s). I have been lucky in the last few weeks/month I have been going to a chiropractor and he has been working with me and I have gained 7 or 8 lbs. I'm up from 98lbs to about 107.5 and feeling a lot better. Oh and hair loss is another issue and vision changes.

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Hi Miss Sillyak,

It was good to get your post. I have so many questions for you!!!

The first is about Soy. Why do you believe soy is poison? I had always heard that if you were lactose intolerant to use soy. Even with babies, a lot of the time doctors will put babies on soy formula if they cannot tolerate a milk-based formula. My 3 year old is lactose intolerant and drinks soy milk (Silk). He is very underweight for his age (27 lbs). To put this into perspective, my 1 year old is 23 lbs. I am going to have him tested for Celiac. Tell me everything you know about soy. I checked my coffee and tea labels and I don't see any soy ingredients.

Next is modified food starch. Is it ALWAYS something to stay away from? Modified corn starch and such? It seems like I read a post last week when I joined that said modified food starch is not always gluten, (I think it was titled "What was your best advice").

Now, what is "night shade"? Legumes are all types of beans, right? Are you saying not to eat beans?

I told you I had a lot of questions :lol:

Okay, what is a compounding pharmacist? I take Levothroid for my Graves disease/hypothyroidism. Should I be concerned about the dye in the pill? Is it the same as Levoxyl? If I should contact the company, what are the right questions?

And finally, I would like to know which books you suggest.

Texas Celiac

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Wow, You DO seem very knowledgeable about this. I will check out some of these books and look into a compounding pharmacist.

I will also contact Rachel 24 and KaitiUSA and get their opinions as well.

I am SO glad I found this forum.

If anyone else has any advice or opinions, I would gladly welcome them. I just want to start to feel better and get my life back.

Texas Celiac

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Texas Celiac,

I wouldnt get too worried about other foods right now....going gluten free is a major adjustment in itself. If you find the gluten-free diet isnt working for you then you may want to look into other possibilities. Lots of people do just fine only eliminating gluten.

I tried a few different thyroid meds....levoxyl, levothroid, cytomel and Armour. When my dose was 50 mg I was taking a white pill. When they bumped me up to 75 I was still on the white pill but had to use a pill splitter. Eventually a new Endo. gave me a new script for 75 mgs and I got a lavendar pill. After 4 days my face swelled up and my head was hurting quite a bit. I felt I was "allergic" to the meds so I went back to white pills and then Armour. That was 2 years ago and I now know that I'm sensitive to food dyes and only 2 weeks ago figured out that I'm intolerant to corn all this time.

I had to go to a compounding pharamcy to get pills that are gluten, corn and dye free. Today's only my 3rd day on my new pills. I think most people dont have problems with their thyroid meds though so if you've been fine with them all this time I wouldnt worry. I just got really lucky with this corn intolerance. :(

Oh yeah...I second the recommendation for "Dangerous Grains". Its my favorite of all the books I've read having to do with gluten intolerance.

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Rachel,

How did you know that you have a corn intolerance?

Also, you won't believe this, but my doc has me on 175 mcg of Levothroid b/c as I said before my TSH was 25. I don't know of anyone else on this dosage but then again I don't know too many people with Graves.

Texas celiac

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Hi,

I was recently diagnosed with a thyroid problem & now take synthroid medication for it. The thyroid problem was discovered when I went to see the doctor about an on and off upset stomach and bloating. I found out that approx 30% of people who have celiac disease will also soon have a thyroid problem. Many people will not even realize they have an intolerance to gluten for years and years as their symptoms are not the every day normal ones. The only problem with this is that their thyroid is slowly being affected as well as other possible problems. Eventually everything comes to a head, as was the case for me... my thyroid just seem to go off one day & as well stomach problems consistent with celiac disease appeared.

I do find it hard managing the both of them. Sometimes I feel tired or have brain fog and I don't know if it is from the thyroid or gluten intolerance. When my stomach gets upset, that is definitely from the gluten.

I don't have Graves Disease for my thyroid but instead the one where the antibodies that attack gluten are similar to the ones that are attacking my thyroid.

All the best,

Steve

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