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Member Since 12 Sep 2009
Offline Last Active Jul 17 2015 09:42 AM

#735696 Sharing - What Supplements/vitamins Work For You?

Posted by on 02 October 2011 - 09:12 AM

I think one of the really challenging things to find, as a super-sensitive, is supplements that don't make you sick. Probiotics, vitamins and minerals, digestive enzymes - all the things that can be really helpful, but we have to find safe sources.

So, what brands of supplements/probiotics/other 'gut/body helpers' do you take that don't make you react?

Hi Shauna,

This is a really good question. I wish I had some answers for you. So far I have reacted to many muti vitamins. I think I tried about seven different companies and I still haven't found one that I can take. After the last time I'm really afraid to take any and I've completely given up on them.

Back in Jan of this year I was so sick from vitamins and it took me four months to realize it. The doctor thought I had lymphoma and I had to go through a laparoscopy surgery to remove enlarged lymph nodes in my stomach. And all because of "gluten free" vitamins... <_< Even the doctors didn't think it was because of the celiac disease. All the path reports came back negative for cancer , but a reactive lymph node was the diagnosis. Which means it could be from an autoimmune disease. Duh -celiac disease! It wasn't until two weeks after the surgery I started to make the connection to the vitamins. And I had to go through even more testing for other autoimmune disease -everything came back negative, Thank God! I stopped taking the vitamins and wouldn't you know all my symptoms went away and I starting feeling really great again. I even thought about suing the company, but the lawyers thought in the long run it wouldn't be worth it. So I actually had to have surgery because of vitamins. :angry:

Right now I take:
Slow Fe iron -red pills
Nature Made Calcium with vitamins D (but not everyday)

I haven't tried anything new since last May so I thought I'd try another multi vitamin two weeks ago. I tried the Nature Made multi vitamin (gluten free) and the next day I felt I got glutened pretty bad so I had to stop them right away. I always have reactions the next day after I get glutened and I made sure I didn't try anything else so I know it was the vitamins.

After two years, I've just come to the conclusion that I'm just too sensitive to take any muti vitamins and I just try to eat really healthy. I'm thinking that there are just too many ingredients in the multivitamins that it makes it hard for them to be uncontaminated by gluten.

If there are any muti vitamins that the super senistive people take without any problems I'd love to know, too.

Thanks Shauna for posting this. You must have been reading my mind... :)
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#698286 Yeaaaa - Sharing.

Posted by on 10 May 2011 - 11:13 AM

I'm so happy for you!!! Congratulations! That's great news! :)
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#691372 Frustrated, I Give Up!

Posted by on 11 April 2011 - 10:32 AM

Good (?) morning, everyone.

I am a newly diagnosed Celiac patient, diagnosed January 25 of this year. A little bit of my history:
I am 47 years old, married with 3 grown children. Most of my life I sailed through with what I termed as a "cast iron stomach", able to eat anything with no gastrointestinal issues. About 4 years ago while traveling to Las Vegas with my husband and one of my daughters I became ill. The Big D, and vomiting our first night in Vegas. We drove there and I assumed that the first day on the road I got a little food poisoning. Well, I left DH and DD to sightsee and retired to our room thinking I would be better in the morning. Fast forward 6 days, to me laying on the floor of the bathroom in our room, I hadn't left the room in 6 days. Fluids exploding out of my body no matter what I ingested. DH begged me to go to the hospital, but I was afraid to leave the room and the safety of my porcelain altar.

Finally I agreed to go to a clinic. The doctor there gave me some lovely pills to slow things down, and as a perk they made me feel all dream like and stopped everything in their tracks. After receiving IV fluids I was allowed to leave with enough meds to get me home. My doctor at home did the usual stool and standard blood tests and all were negative. Things settled down. Periodically I began to have recurring symptoms, but assumed that since my nasty trip experience that my guts were just "weakened" and I would have to suck it up. After all, I was no longer a young chick!

Well, this past fall beginning in September I became very ill. For the entire month of September I could not work, I was in my bathroom. I could not leave my house. Really. It was horrid. I drank water, it came out, Niagra Falls action. The doctor did stool samples, they did blood work, they had me on three different antibiotics and Flagyl which made me want to die. Nothing worked. I took enough Immodium to ensure the CEO of the company could add a new wing on his mansion and furnish it, too.

Nothing worked. The doctor and I had a huge go-around about a colonoscopy, as there was blood present in my stools. I dug in my heels and there were some words but he won. The test was inconclusive, inflammation but no polyps etc. In December for the entire month I began to lose a half pound a day. He suggested a gastroscopy. I told him to go... well. He finally did a Celiac panel. The values were all in the high hundreds. He diagnosed me with Celiac. OK. This diagnosis I was given in late January as mentioned above. I can deal with this I thought. Better than the Big C.

So, I go gluten free. By February I am feeling great. Fabulous! The weight loss slows, then stops. This was a little disappointing, but whatever. Then last week, it started again. Last Saturday, my husband "glutened" me. I am pretty sure it was unintentional as he has been SO supportive. We were in another city, he bought some cashews and said they were fine. His eyesight is not what it used to be and he didn't see the malt barley soy flavoring ingredient. By evening I was suffering horribly... cramps, terrible.

Next morning, Big D came to visit. And nothing has been right since then. It's been what, going on 9 days and I have been so careful of what I eat and nothing is working. I am so hungry and everything is going right through me. I give up. I am drinking lots of fluids, and G2 Gatorade. I take a chewable gluten free multivitamin. I drink water. I am sooo hungry. Any suggestions? Because if this keeps up, I am just going to go to my favorite bakery this afternoon and buy a loaf of bread and make sandwiches today :) I mean, if I'm going to eat gluten free and suffer with this diet and STILL be sick, I might as well have a reason to be. Right?

I am sorry this is so long and I am so whiney. Truly I am, and I thank you for sticking with this and reading thus far... if you made it! I just needed to vent, and maybe this will give me the strength to pull off another day of this hell. But the cramps, gas, bloating and diarrhea are really taking their toll. Oh I went to the Dr. last week and he sent me for blood tests. For a lot of things, just waiting for results. Will post when I hear anything. Thanks for being here, fellow Celiacs.


Hi Dee,

I so understand what you're going through. This disease is hard to deal with sometimes and we often have set backs, but that's all it is is a set back and it will be over soon. As we remove gluten from our diets, most of us become more sensitive to it and since your pretty new to the diet, I'm guessing that your intestines aren't healed yet. Hopefully after a year or two of being gluten free you might not have reactions this bad when you get accidentally glutened. But, what ever you do don't go to the bakery, it'll just make things worse for you and it will take you longer to heal. Maybe treat yourself to something else like a gluten free Betty Crocker cake (it you can tolerate it) or maybe treat yourself to it when you feel better. And the Banana Baby food sounds like a great idea! Things will get better! Hang in there! We all understand what you're going through...

Hugs! :)
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#684197 Thyroid Meds Had To Be Lowered Since Going gluten-free

Posted by on 16 March 2011 - 06:03 PM

I was never on meds, but before I was diagnosed I was slightly in the low range on my thyroid numbers. They normalized after a few months gluten-free.

I'm so happy that you didn't need thyroid meds, Patti! Sounds like they caught the celiac right before you started having problems with your thyroid! It's amazing what a gluten free diet can do! :)
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#684153 Thyroid Meds Had To Be Lowered Since Going gluten-free

Posted by on 16 March 2011 - 01:42 PM

Hi everyone!

In the last 18 months of being gluten free I had to lower my thyroid meds to almost half the amount I was taking before being gluten free. Can anyone else relate to this? I keep getting hyperthyroid. I'm actually hyperthyroid right now - joy -joy! :D

I've been on thyroid medicine for about eleven years before being diagnosed with celiac disease. I had Hasimoto disease then. Then I had thyroid cancer almost three years ago, had my thyroid removed, received radiation and my endo doctor keeps my thyroid hormones slightly repressed (slightly hyperthyriod) and is keeping my TSH levels at .2. So it seems as my intestines been healing, I'm absorbing more thyroid meds, but then I get hyperthyroid and then they have to lower my dose again. It's been a constant cycle in the last 18 months, but I do understand they are doing this to protect me for getting more thyroid cancer. :( I think they had to lower my Levoxyl about 10 times since they didn't want to go too low because of the thyroid cancer. My dose has been lowered very gradual.

When I first started the gluten free diet I was taking 137mcg daily and one & a half a pill on day 7. Now they just lowered me again and I'm all they way down to 88mcg! It's unbelievable! Just proves how much nutrients I wasn't absorbing and explains why I was so sick when I was diagnosed. I've been getting my bloodwork done about every eight weeks. I'm hoping that this is the lowest it gets and my intestines are completely heal by now.

I wondering if there was anyone else that was on thyroid hormones before going gluten free and then had to get their thyroid hormone dosage lowered because of going gluten free.

It also seems that I'm very sensitive and I can't eat a lot of supposedly processed "gluten free" foods. I'm wondering if it's because of the hyperthyroidism? I did have a gastric emptying study done in Dec. 2009 and it showed that my stomach was emptying way too fast. The radiologists said it was the fastest they ever seen. :o The GI doctor told me that the hyperthyroidism can cause this, so I didn't get retested.

Can anyone relate to any of this?

Thanks everyone! :)
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#682752 Symptoms Went And Then Returned

Posted by on 12 March 2011 - 09:48 AM

Hello all. I was diagnosed by biopsy in October 2010. I have been gluten free since then. After going gluten free I experienced significant vertigo and dizziness, that went too. Everything was going along marvellously and I developed a rather bad cold about a week ago. The cold seems to have gone, though I am now, again, extremely fatigued, feeling dizzy, headaches, slight vertigo, pretty much all the symptoms I had before diagnosis (and which continued for a couple of months).

Is it to be expected that these symptoms will return now and again until the gluten is entirely out of my system? I can't bear the thought of going back to where I was late last year; I couldn't even work then and I'm frightened that it's 'all come back'. I am pretty strict with my diet, but maybe some gluten accidentally got in. If it did and it was a small bit, would it make me feel this bad again?

Thank you for listening and I look forward to hearing from you.

If some of your symptoms are coming back I think it could mean you might be getting a little gluten somewhere. Sounds like your body is trying to tell you something. We tend to get more sensitive to gluten when it's out of our diets for a while. You might be getting trace amounts and not know it. I would recheck all your vitamins (vitamins could have barley in them and still claim they are gluten free), medicines, and even processed gluten free foods can have trace amounts of gluten.
Also, if you haven't started one already, a food journal is really helpful. I would start documenting your reactions along with the foods your eating. What helped me is going on a wholefoods diet( completely natural gluten free foods -fresh meats, veggies and fruit and then when I felt better I would add an item to my diet once a week. I know it's a pain, but since sometimes we don't react right away and it's hard to tell where we are getting the gluten from. I now know I react the next day. You'll start to see a pattern.
Keep reading these forums. I don't think I would have got better if it wasn't for this forum. Everyone is so helpful and they know so much more then any of the doctors do. And just because something says it's gluten free doesn't always mean it's gluten free. I learned this the hard way. When calling companies always ask if they are made on the same lines that gluten products are made on. I can't eat any products that are made on shared lines. My reactions come right back. Hang in there!

I hope you are feeling better soon! :)
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#681966 Need To Hear A Success Story!

Posted by on 09 March 2011 - 03:23 PM

It helps a lot!! What an amazing story! So glad you are well and cancer-free!

(I know this is Nat's post, but I'm following it like a hunting dog LOL)

You are so inspiring!! I am weeping with joy at the stories because you all found healing!

Parts of your story are similar to mine-- the sore throat, anxiety, depression, insomnia. I have been dealing with YEARS of ill health and chronic, disabling pain and yet, I feel as if I will be all right in the end. I spent thousands of $$$ on tests, therapies, etc... for 3 years...No help from any doctors, testing, etc...they just shrugged their shoulders at me. said it was "IBS" or "GERD". Now that I know what I am dealing with, I will be okay. (I figured it out myself, researching tirelessly with my foggy brain-- and told my doctor who said OMG! you are right....) :o

The people on here ARE more knowledgeable than any medical professional. I am grateful to you all!
Thank you!!

Hi IrishHeart!

Sorry I didn't get a chance to respond to this yesterday. I'm so glad you figured this out on your own and pushed forward! I can't tell you how many doctors I went through in the last twenty years ... Clueless! :blink:

And yes, you will get better! It's more work, more cooking and more preparing, but it's so worth it to feel good! I can't believe all the things I can get done in one day now. I have so much more energy! Gluten completely effected my moods, also. I'm a more pleasant person since I've been strictly gluten free. :D I heard the first two years are the hardest, but once you get through that, the diet becomes second nature.

Happy Healing and I hope you feel better soon! :)
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#681455 Is There Anyone That Doesn't React When Glutened?

Posted by on 08 March 2011 - 09:47 AM

I don't think I do. The only thing I can point to is that I've been slightly depressed for a few years now - I've always attributed it to the stress of my first cancer diagnosis, plus the daily stresses of work, kids, etc. - now I'm wondering if maybe the celiac has something to do with it. Even if it does, though, it really is not much to speak of - a little bit lower energy and a bigger desire to watch TV :rolleyes: - but I've continued to be very functioing.

I, too don't have violent reactions when I get glutened, but I've learned that I'm really sensitive now and I can't eat a lot of gluten free processed products. I usually get a sore throat and a slightly tender stomach, but that's usually it. I've been gluten free for 18 months now, but I know I've had a form of silent celiac disease for at least twenty years. I didn't have any GI symptoms until three months before I was diagnosed. And it was just acid reflex, but it was really bad. But I was always sick and always going to the doctors for one thing or another. I also had trouble with feeling tried, depression along with anxiety and insomnia. And I was being closely followed for lymphoma for the last eight years and then in 2009 I was diagnosed with a rare form of thyroid cancer. It wasn't until a year after I had the radiation treatment that I finally was diagnosed with celiac disease. I had to get deathly sick for that diagnosis.

I do think I've gotten more sensitive to gluten now. I do keep a food journal and I document all of my reactions, but they are very mild -just the sore throat and tender tummy. I always get the sore throat the next day after I get any cross contamination. It takes a while for my body to react, but everyone's so different.

The good news is a lot of these health problems will go away! :) I haven't had a sinus infection or bronchitis since going gluten free! (I was getting them 4 times a year) I sleep great, depression and anxiety are gone. And I don't have to get CT scans anymore for the docs to watch me for lymphoma. I've been cancer free for almost three years now! I feel so much healthier!

zus888- I think we might have the same dietitian! :)
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#681154 Need To Hear A Success Story!

Posted by on 07 March 2011 - 12:31 PM

Hi Nat!

Like so many of us, I have a lot to be thankful for since the gluten free diet! I'm definitely not an old timer, but what a difference! I've been gluten free for 18 months. It really saved my life! It all started twenty years ago with sinus infections -4 x year, yearly bronchitis, depression, anxiety, insomnia, infertility and many kidney/bladder infections. I was starting to get immune to the antibiotics they were always giving me. I had to start buying the most expensive brands since the cheaper brands didn't work on me anymore. Then about five after that I was diagnosed with hasimoto thyroid disease. I had so many biopsies done on my thyroid since then. Then I was diagnosed with anemia and then vitamin D deficiency so I started taking supplements. About a year later, the doctors found out I had enlarged lymph nodes in my stomach area after I was having night sweats, feeling weak and tried. They really thought I had lymphoma so I had biopsies of the lymph nodes also - that was so painful! :blink: Since the biopsies came back benign, I had to have a CT scans done every 6 months. They wanted to keep an eye on them to see if they showing any changes. Then three years ago I found a lump on my collar bone -had to have it biopsied along with a thyroid nodule and eventually had to have my whole thyroid removed. It was cancer - a rare and an aggressive form of thyroid cancer that is resistant to radiation treatment (Hurth Cell Carcinoma). Lucky me... :huh: I was so scared. My husband was a huge help! After I had the surgery, we did have good news form the pathology report. It was Stage 1 cancer and the surrounding lymph nodes were clean. It was a huge relief! I did have go through radiation treatment afterward. I did really good through it all, but then a year after that I got so sick with bronchitis again & I completely lost my voice for two whole months! I went to eight different doctors & no one could figure out what was wrong with me. I got two different diagnoses - one of them acid reflex and sometime they would just say "we don't know what's wrong with you. " It was crazy! I was given medicine for acid reflex but the medicine didn't help me. I started to get worse -losing weight, but eating all the time, so tried that even taking a shower was the only thing I could do all day. I started not being able to put anything in my stomach. It was the scariest feeling -not being able to eat & feel so hungry at the same time. I was 96 pounds at 5'2 and I really couldn't eat! I finally went to my Oncology doctor. I really thought I had cancer again & the doctors just couldn't find it. I really thought I was dying and I think I would have if my Oncology doctor didn't order the upper endoscopy for me. She really saved my life! I thank her every time I see her! I was finally diagnosed with celiac disease - twenty years after having so many health problems.

Now, today I feel great! It took me so long to get better. When everyone told me I would feel better and a lot of my health problems would go away, I found it really hard to believe. Eighteen months ago, I would wake up every morning feeling the same - weak, sore throat, stomach was always tender, I couldn't sleep, I had so much anxiety and I was still so under weight. I thought I was going crazy sometimes. :blink: I was reacting to everything. I thought I had other food intolerances. I couldn't drink milk, but I was okay with cheeses. I did finally figured out I was still getting a small amount of gluten from a prescription, supposedly "gluten-free" products and vitamins. Gluten is sneaky & cross contamination is something that hard to figure out. Also, learning the gluten free diet is a challenge when you don't feel good. I learned the hard way that just because it says "gluten free" doesn't mean it's really gluten free. It took about eight months for my throat to heal. Finally found out that it is acid reflux. And it does come back if I get a little cross contamination. It's like my own little gluten meter. ha-ha! :D . I think at six months gluten free I was about 80% better and I was able to function pretty well. I really think it took about a good year though to feel 100%.

Today, pretty much all of my health problems went away! I've been cancer free for almost three years. My Oncology doctors aren't following me as closely since the cancer was most likely a result of the celiac disease. I'm longer being followed for lymphoma. I don't have to get abdominal CT scans anymore. The lymph nodes in my stomach area a stable and haven't change, so the doctor told me there's no reason for me to come back! I was sooo happy about that, too! I do stay away from a lot of processed foods even though they claim they are gluten free. It's just not worth it. I'd rather feel good! I realized that I'm really sensitive so it's best for me to stay way from those kinds of products even Glutino products are not something I would eat everyday and they are supposed to be the most trusted. But, I do have so much energy, I sleep like a rock, depression and anxiety are gone. I don't take any medicine except thyroid replacement hormones and vitamins. I've gained weight -I'm now 110 lbs! This is the most I ever weight in my whole life! I've actually had to cut back my eating since I was so used to eating all the time. It was like a habit that I had for the last twenty years. I always exercised & tried to take care of myself, but now it's so much easier. I feel stronger! And I haven't had one sinus infection, bronchitis or kidney infection since I've been gluten free! I hardly ever get sick. I've had one little cold since going gluten free. It lasted for five days! I couldn't believe it! It's like I have a new body...almost! ;) And even my eye prescription has improved! My doctor said it's because my body is absorbing more vitamin A!

I'm only 40 years old, but I feel like I had enough health problems to last me a lifetime. I wish I was diagnosed with this disease years ago. I think it would have saved me from so many heath problems. It's scary to know how little the medical community knows about this disease. I'm not sure if I could of got better if it wasn't for the helpful people on the forum. The people here are more knowledgeable about this disease than any doctor I have meet!

I hope this helps! Happy healing! :)

P.S. Sorry this is so long. I kind of got carried away! :)
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#677988 I Just Don't Want To Even Eat

Posted by on 24 February 2011 - 06:59 AM

I'm headed into my 5th month since going gluten free now. It seems like the past few weeks every single time I eat something I feel bloated afterward. I've started eating such little bits at at time; a banana for dinner, yogurt and fruit for lunch, cereal as a snack, or maybe just some plain chicken and a veggie for dinner. Does this get better? I'm starting to enjoy a growly stomach because I don't feel bloated when I'm hungry.

I just ate some white rice and steamed sugar snap peas for dinner and it seems strange that I would feel bloated after just that!

*sigh* Any suggestions??

Before going gluten free I used to get teased by friends and boyfriends about how much I obviously loved food!

I would really make sure your not getting cross contamination from any vitamins, over the counter drugs, prescriptions or processed "gluten free" products. This happened to me & it took me so long to get better. Vitamins are the worse for stating that they are gluten free when they aren't completely free of gluten. Some can add Barley but remove the protein that causes us to react. But all of us react to this anyway. They can still place the gluten-free label right on them. I know...it's crazy. :blink:

And not all gluten free packaged food are completely free of gluten. There are some companies that are better than others, but just because something says "gluten free," doesn't always mean it's completely free of gluten. Everyone has different levels of sensitivity, so it might take you a while to figure out what your level is. And if you haven't already, eliminate all processed foods and eat fresh veggies, meats & fruit and keep a food journal. Once you role out all the processed foods & just eat fresh whole foods, than I would add in a processed food one at a time once a week to see if you have any reactions. This way you'll be able to track down any foods that you are reacting to and you'll start to see a pattern. I always react the next day, so this always helps me a lot.

I know it's a lot of work, but believe me it's so worth it! It took me a long time to figure it out & I'm still learning something new every day. Keep reading these forums. There is so much great information in here! The members on here are so much more knowledgeable than the any of the doctors and they are so helpful.

I hope you feel better! :)
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#668756 A Couple Of Days Of Disappointments

Posted by on 18 January 2011 - 12:43 PM

I second Pocono Cream of Buckwheat. It's so good with milk and fresh blueberries or strawberries. I eat this about two times a week :)
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#594832 Gluten Free Instant Mashed Potatoes?

Posted by on 24 February 2010 - 04:22 PM

Tigercat, I don't normally buy instant mashed potatoes but did so shortly before Christmas to make a dry instant potato soup mix (it was 'so so') and don't know if I'll ever make it again. But I did find gluten free instant mashed potatoes at Wal-Mart. Great Value brand. On the back of the box it is marked gluten free.

I'd love to have your recipe... :D

Hi everyone! Thanks for all your help! I'm so glad there are so many gluten free potato flakes out there!

Here's my awesome chicken recipe!

4-5 Boneless chicken breasts
1 egg
1/4 cup of milk
1 cup instant potato flakes
1 tsp. garlic salt
1 tsp. paprika
1 tsp. poultry seasoning or McCormick Original Chicken Seasoning
1/2 cup Parmesan cheese
2 Tbsp. melted butter or margarine

* Preheat oven at 400

Wash chicken & trim fat. Pat dry.
In a bowl, beat egg & milk.
In another bowl combine potato flakes, garlic salt, paprika, Parmesan cheese and poultry seasoning.
Dip chicken breasts in egg mixture.
Then roll chicken in the potato mixture and evenly coat all sides.
Place chicken in baking pan.
Sprinkle the melted butter on breaded chicken
Bake at 400 for about 20 mins.
* Increase oven temp to 425 - cook for an additional 5-10 mins or until chicken is tender & juices run clear

Boy, I'm getting hungry! :D

Enjoy Everyone!
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#593077 Sorrento Whole Milk Ricotta Cheese

Posted by on 16 February 2010 - 02:50 PM

Thanks Patti & Lisa!

I can't wait to try my new lasagna recipe! It'll be my first so I want it to be at least eatable... unlike my meatloaf last week.

Lord help me! :rolleyes:
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#573432 Latest In Tsh Levels Controversy?

Posted by on 06 November 2009 - 12:42 PM

According to the American Endocrinology Association, TSH levels above 3.0 indicate Hypothyroid, which needs to be treated. Unfortunately, too many Endos look at the old levels. They need to be re-educated :blink:

Totally agree! My endo follows this new giudeline also.
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