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Questions From A Celiac Newbie

Lins

By Lins
in Coping with Celiac Disease

Recommended Posts

Lins Rookie
Lins
Posted

Hi!!

I'm so thankful to have a message board to go to! I was confirmed to have Celiac earlier this week, after blood tests and a biopsy. I've gotten the Gluten-Free for Dummies book and am learning a lot and appreciate her humor. As far as I know, I have been gluten-free since last Friday. And I have some questions if you would be so kind...

I gained weight prior to diagnosis. Have any of you lost weight? Like in just a couple of days?? I could see where I would lose weight what with only eating fruits, veggies, lean meats, ets. But it seems to be making a huge difference very quickly.

Am I detoxing simply by being gluten free? My hair is different and my skin is different.

What's the deal with modified food starch?

Oatmeal is just a bad idea, right?

What good cereals have you tried?? (I miss my cereal. :( )

I know I had more questions swirling around, but am at a loss right now. While the thought of no more pizza from my favorite local joint is a bummer, I can't help but be very excited about feeling better! I was lucky enough to be diagnosed within a month of seeing a doctor, although I waited for over a year before seeking help. Still, I see from research that people suffer for YEARS!

I look forward to the info, and hope I can get to a point where I can offer some advice too. Thanks in advance all!

Lins

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Piccolo Apprentice
Piccolo
Posted

Welcome Lins,

Yes it is a bit overwhelming in the beginning. Just take a deep breath and relax. Some here have lost weight and some have gained. Did you know you can still eat cereal. The main items you need to avoid are wheat, rye, barly, malt and regular oats. Rice Krispies contain malt. You can also buy gluten free pizza crusts and pizza so you don't have to give it up.

Again welcome and ask the questions.

Susan

Lisa Mentor
Lisa
Posted

Welcom to the Board Lins!

This diet is very confusing in the beginning. Feel free to ask away.

Modified food starch (in the US) is general corn derived, unless it is listed as Modified Food Starch (wheat).

Oat are not recommended because of the potential of cross contamination in the processing.

There are many cereals that are available (I don't eat cereal, but others will post).

Dairy often causes problems in the beginning and it is recommended to be dairy light of eliminate it all together and re-introduce it after you have healed.

Don't forget to check you shampoos, lotions, lipsticks, etc....any thing that can find its way into your mouth.

The diet is hard in the beginning, but soon it will become second nature.

dionnek Enthusiast
dionnek
Posted

In the US, modified food starch would have to say "wheat" if it contains wheat. Most is made from corn. It could theoretically be made from barely or rye, but I don't think any is (Richard knows more about this, but if it says modified food starch and does not say wheat anywhere, then I will eat it).

Oatmeal has lots of different issues - mainly CC in the processing/growing, but I've also seen research that says even gluten-free oats might cause some celiacs problems. I haven't tried any oatmeal since my dx 1 year ago, but some on here eat it all the time.

Cocoa Pebbles and Fruity Pebbles (and Trix I think) are gluten free cereals. Also Dora, Little Einsteins, and Micky Mouse Clubhouse are gluten-free (they are fairly new). Make sure yu read ingredients every time though, b/c they can change (as Trix has been known to do quite often!). I buy the Nature's Path gluten-free cornflakes and Erawhon (sp?) puffed rice (just like rice krispies) off of amazon - they are much cheaper and free shipping. Envirodiz has several gluten-free cereals, but I don't like any of them for some reason. many people do though. I haven't found any of the gluten-free cheerio replacements to be edible- my 2 1/2 yr. old won't eat them either, but some people love them. You pretty much just have to try things yourself, b/c as you'll find out everyone's tastes are very different :)

Karen B. Explorer
Karen B.
Posted

If you have a favorite food that you're looking for a gluten-free replacement, post it here. This is a great place to find out stuff like that. It seems overwhelming at first but it gets easier. What made it easier for me was finding gluten-free food lists on my favorite fast food places and the Hormel gluten-free list convinced me I didn't have to go back to the Little House on the Prairie to make food, I could have easy things to eat (Open Original Shared Link). They do make gluten-free oats but my favorite hot cereal is instant quinoa (Open Original Shared Link). There are lots of cold cereals.

Don't forget things like toasters, waffle irons and other kitchen items that can hold crumbs from previous glutened items. Also, my sneaky hubby had to prove to me that he could make me sick by eating gluten and kissing me before brushing his teeth. Check any pills you take, the melatonin I was getting from GNC was not gluten-free and gave me a rash.

The best news is you have an answer and, unlike many people with other health conditions, you don't have to take a pill with unknown side-effects to keep you healthy. You will be amazed by how much better you feel.

Good Luck!

Kim Clayton Newbie
Kim Clayton
Posted
Hi!!

I'm so thankful to have a message board to go to! I was confirmed to have Celiac earlier this week, after blood tests and a biopsy. I've gotten the Gluten-Free for Dummies book and am learning a lot and appreciate her humor. As far as I know, I have been gluten-free since last Friday. And I have some questions if you would be so kind...

I gained weight prior to diagnosis. Have any of you lost weight? Like in just a couple of days?? I could see where I would lose weight what with only eating fruits, veggies, lean meats, ets. But it seems to be making a huge difference very quickly.

Am I detoxing simply by being gluten free? My hair is different and my skin is different.

What's the deal with modified food starch?

Oatmeal is just a bad idea, right?

What good cereals have you tried?? (I miss my cereal. :( )

I know I had more questions swirling around, but am at a loss right now. While the thought of no more pizza from my favorite local joint is a bummer, I can't help but be very excited about feeling better! I was lucky enough to be diagnosed within a month of seeing a doctor, although I waited for over a year before seeking help. Still, I see from research that people suffer for YEARS!

I look forward to the info, and hope I can get to a point where I can offer some advice too. Thanks in advance all!

Lins

Emily Elizabeth Enthusiast
Emily Elizabeth
Posted
What good cereals have you tried?? (I miss my cereal. :( )

Lins

I was just diagnosed on the 15th so I'm in the same boat. My weight seems to be jumping up and down slightly. I get SO hungry and lightheaded and foggy that sometimes I think I eat too much since eating seems to be the only cure. Then I barely eat anything because the way things are processing is not pleasant if you know what I mean. I can't wait to start feeling better and get on a comfortable regular diet again!

To answer your question about the cereals, I used to eat Kashi cereals and loved them. The ones that I have found now that I like (and they have fiber) are:

Mesa Sunrise - Open Original Shared Link free.com/item_detail.aspx?ItemCode=958023

Cinnamon Crunch Granola - Open Original Shared Link free.com/item_detail.aspx?ItemCode=958001

Puffins Honey Rice - Open Original Shared Link

Nutty Flax - Open Original Shared Link

I hope this is helpful!

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Emily Elizabeth Enthusiast
Emily Elizabeth
Posted

Okay, you may want to scratch the Nutty Flax. I just found this post on it. I'm still not feeling better so I can't tell what's doing it just yet.

Open Original Shared Link

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Ya gotta read the label on the Puffins, too--most of them do contain gluten.

tiredofdoctors Enthusiast
tiredofdoctors
Posted

Hi Lins -- Welcome to the board! We were all in the same boat you are in at one time. It's confusing (to say the least), very frustrating and sometimes pretty scary. You have found the BEST place to find information and the most kind, caring people you will ever meet. Seriously. I started on the board two years ago, decided to go gluten-free two and a half months later (some people have really hard heads!) and don't know what I would have done had it not been for SEVERAL members on this board.

Whoever posted that Richard would be able to tell you more about (I can't remember what it was), they are right -- he is amazingly intelligent, but is able to put it in to a very understandable form.

With regard to cereal, I recommend Enviro-Kids Peanut Butter Panda Puffs. They are the BEST! Their Puffins cereal is pretty awesome, as well!!! They are also pretty much sugar-y (only with organic, healthy sugar) like kids cereal. I just bought some granola-type cereal from Whole Foods. It looks remarkably like the alfalfa blocks we fed our rabbit when we had it. Ick. It tastes pretty good, though! I'll take a gander at what the name is and post that, as well.

Welcome, and please know that you are not alone in your quest to be healthy. You will have a lot of people on whom you can rely upon for the best information and unbelievably good support. It's a journey, let me tell ya!

((((((((Hugs)))))))) to you,

Lynne

VegasCeliacBuckeye Collaborator
VegasCeliacBuckeye
Posted

"I gained weight prior to diagnosis. Have any of you lost weight? Like in just a couple of days?? I could see where I would lose weight what with only eating fruits, veggies, lean meats, ets. But it seems to be making a huge difference very quickly.

Am I detoxing simply by being gluten free? My hair is different and my skin is different.

What's the deal with modified food starch?

Oatmeal is just a bad idea, right?

What good cereals have you tried?? (I miss my cereal. )"

1. Losing and gaining weight are both symptoms that occur both pre and post diagnosis. When I was diagnosed (and after going gluten free), I lost 25 pounds in three months.

2. Yes, you are detoxing from gluten. Gluten has been known to have "drug-like effects on people. It is normal for your body to crave it and to go through some adjustments after going gluten free. My hair and skin got healthier after a year of gluten free. It happens.

3. Most modified food starch is corn based and ok (although you should check when unsure). If the food starch has wheat in it, it will say so on the label per 2006 food allergen laws.

4. Oatmeal is off the list unless you get gluten free oatmeal (not Quaker Oats)

5. For good cereal, I eat Fruity Pebbles, Cocoa Pebbles, Envirokidz Frosted Flakes and Bob's Red Mill Hot Rice Cereal (with cinnamon and syrup).

Hope this helps,

BB

fletch84 Newbie
fletch84
Posted

I am in the exact same position as you, I was recently diagnosed (about 2 weeks ago) and my mom took me on a HUGE shopping trip to Whole Foods to stock up on Gluten-Free foods.

Amy's makes tons of Gluten-Free foods, and they actually make a delicious gluten-free pizza...their website is here: Open Original Shared Link

I hope that helps a bit :)

Emily Elizabeth Enthusiast
Emily Elizabeth
Posted
Ya gotta read the label on the Puffins, too--most of them do contain gluten.

Supposedly the honey rice is gluten free. At least they advertise it as such on their website:

Open Original Shared Link

I still can't tell what is giving me problems since I have yet to be healed.

Lins Rookie
Lins
Posted
  • Author

Wow you guys!

Thanks so much for the information!! I joined the Prevention forums a few years back to lose weight on the South Beach diet and I've got the same warm fuzzy feeling here as I get there!!

I'd forgotten I asked about the modified food starch already. I just had a smoothie and the yogurt had it in it and I'd worked myself up about it and was expecting the worst! So I guess I can relax. We're headed to my MIL's this afternoon and after hearing her menu, I'll be packing a lunch, lol. Although I have to admit my tossed salad with fresh shrimp and papaya poppyseed dressing sounds way better than her sloppy joes and chips!!

I found some of the cereals you all mentioned at my Kroger's store. That's also where I got my salad dressings. I carry a big purse and I can totally see me toting a bottle of it with me! I DID have to hold myself back from buying one of everything gluten-free though. I decided I didn't keep lots of cake and pancake mixes in my pre-gluten free life, so why start now???

Hope you feel better soon Emily Elizabeth. Thanks to you all and have a great weekend!!

Lins

janjal Newbie
janjal
Posted

Hi, I found out that I had celiac's four month's ago. I was one of those long time sufferers. I have most likely had it for over 14 years. Have been tested for every thing. The one gastro doctor said that I had IBS. For years my blood work was always off. My liver enzymes were always high but not high enough to be super alarmed. My regular doctor retired and my new one is the one who figured out what was wrong. I love her. Went to a different gastro doc. had the biopsy to confirm.

This is totally a new way of life for eating. I am married with two teenage daughters. I am the only one with celiac. I have to be creative with my cooking. It is still a learning experience. I too read the celiac for dummies cover to cover.

As for cereals my favorite is Nabisco Cream of Rice. You can get that in the regular grocery store. I have tried different kinds of cold ones. So far Wegman's has a corn flakes with strawberries that is good. I also eat cereal bars from Glutino and Enjoy Life. Those I get in Whole Foods.

This site has been a great support for me also.

It will take time. Feel better

JJ

NoGluGirl Contributor
NoGluGirl
Posted
Hi!!

I'm so thankful to have a message board to go to! I was confirmed to have Celiac earlier this week, after blood tests and a biopsy. I've gotten the Gluten-Free for Dummies book and am learning a lot and appreciate her humor. As far as I know, I have been gluten-free since last Friday. And I have some questions if you would be so kind...

I gained weight prior to diagnosis. Have any of you lost weight? Like in just a couple of days?? I could see where I would lose weight what with only eating fruits, veggies, lean meats, ets. But it seems to be making a huge difference very quickly.

Am I detoxing simply by being gluten free? My hair is different and my skin is different.

What's the deal with modified food starch?

Oatmeal is just a bad idea, right?

What good cereals have you tried?? (I miss my cereal. :( )

I know I had more questions swirling around, but am at a loss right now. While the thought of no more pizza from my favorite local joint is a bummer, I can't help but be very excited about feeling better! I was lucky enough to be diagnosed within a month of seeing a doctor, although I waited for over a year before seeking help. Still, I see from research that people suffer for YEARS!

I look forward to the info, and hope I can get to a point where I can offer some advice too. Thanks in advance all!

Lins

Dear Lins,

I have a list that should really help. This is overwhelming. I went through this with myself six months ago. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margerine*

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce (all Lea & Perrins Products are safe)

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and *White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip*

Philadelphia Cream Cheese*

Jell-O Pudding Cups* (Are made by Kraft, clearly labeled if gluten is present)

Yoplait Yogurts* (Includes Whips! The best is the Latte! Gluten is clearly labeled if present)

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)*

Snack Foods:

Utz Potato Chips (Found at Sam

Emily Elizabeth Enthusiast
Emily Elizabeth
Posted
I have a list that should really help.

Bless you for posting this! I am so tired of reading labels (I'm a newbie as well), this is very helpful!

Karen B. Explorer
Karen B.
Posted
Bless you for posting this! I am so tired of reading labels (I'm a newbie as well), this is very helpful!

At first, you are better off eating fresh foods you prepare yourself. But I hit spots where I was away from home and had to find something to eat. It's better to be prepared, take a lunch, stash some Lara bars. One trick I use now when traveling (by car) is to stop by a Kroger deli counter and order a 1/4 lb. of Boars Head and pick up some fresh fruit to go with it. All Boars Head meat is gluten-free, you just have to ask the deli person to clean the cutter before slicing yours. One thing I've always been pleasantly surprised on is how helpful and kind people are when you let them know what you need.

We all know Outback Steakhouse and PF Chang's are Celiac friendly and have gluten-free menus onlne. So does Chili's (Open Original Shared Link) and several others.

If you decide to try fast food, be aware that you're safer talking to a manager and going at off hours. Even then, it's not as safe as an expensive restaurant. But sometimes, you need to know where you can get safe food when you aren't at home. (sometimes, fast food is all that's available) I keep a small folder in my car of the current gluten-free menus from restaurants and fast food places.

Wendy's Gluten Free Menu

Open Original Shared Link

McDonald's Gluten Free Menu

Open Original Shared Link

Sonic and Taco Bell, I've heard iffy things about them so I'm not listing them. Someone else may have a different view. I go to Taco Cabana and rarely have problems, but that may be that the local place knows me so well. Most of the places I've emailed have been very helpful.

Find out if you have a local Celiac Support Group, they can really help you through this and they know all the good local spots.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

NoGluGirl Contributor
NoGluGirl
Posted
Bless you for posting this! I am so tired of reading labels (I'm a newbie as well), this is very helpful!

Dear Emily Elizabeth,

You are so welcome! I know what you are going through. It is so hard! I want to make this transition as easy as possible for others. I have been gluten-free since August of last year. I had to spend so much time worrying and calling. I thought I was going to go crazy!

Sincerely,

NoGluGirl

NoGluGirl Contributor
NoGluGirl
Posted
At first, you are better off eating fresh foods you prepare yourself. But I hit spots where I was away from home and had to find something to eat. It's better to be prepared, take a lunch, stash some Lara bars. One trick I use now when traveling (by car) is to stop by a Kroger deli counter and order a 1/4 lb. of Boars Head and pick up some fresh fruit to go with it. All Boars Head meat is gluten-free, you just have to ask the deli person to clean the cutter before slicing yours. One thing I've always been pleasantly surprised on is how helpful and kind people are when you let them know what you need.

We all know Outback Steakhouse and PF Chang's are Celiac friendly and have gluten-free menus onlne. So does Chili's (Open Original Shared Link) and several others.

If you decide to try fast food, be aware that you're safer talking to a manager and going at off hours. Even then, it's not as safe as an expensive restaurant. But sometimes, you need to know where you can get safe food when you aren't at home. (sometimes, fast food is all that's available) I keep a small folder in my car of the current gluten-free menus from restaurants and fast food places.

Wendy's Gluten Free Menu

Open Original Shared Link

McDonald's Gluten Free Menu

Open Original Shared Link

Sonic and Taco Bell, I've heard iffy things about them so I'm not listing them. Someone else may have a different view. I go to Taco Cabana and rarely have problems, but that may be that the local place knows me so well. Most of the places I've emailed have been very helpful.

Find out if you have a local Celiac Support Group, they can really help you through this and they know all the good local spots.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Dear Karen,

I agree that Emily should eat purer foods when possible. In the beginning, your system is more sensitive. You have to do it a little at a time. I was ecstatic there were things I could have that are not something I have to cook myself! It is exhausting having to make everything if you are like me and on a budget. I must say that if people can buy everything organic, it is best. I would if I could!

Thank you for posting the gluten-free lists for Wendy's and MacDonald's! I do not know if I will ever be brave enough to attempt eating out, though! I am scared to death of cc! I have too violent a reaction to gluten! Unless I can actually stand over the people preparing the food, I don't feel I can trust them! They do not understand the protocol.

Sincerely,

NoGluGirl

grey Explorer
grey
Posted

Hi, I was just confirmed to have celiac last week after blood tests & biopsy and am just going gluten-free too (started thurs).

I've tried the Mesa Sunrise cereal and I LOVED it. I tried making quinoa flakes as a warm cereal this morning (miss my oatmeal!), with a pinch of salt and some brown sugar, but it came out with the consistency & taste of cream corn. Now, I like cream corn, so I ate it, but I hope to find a better recipe than the package directions.

I haven't noticed a weight change, but I do have more energy. Enough so that I have insomnia.

It's nice that there's a bunch of us starting gluten-free at the same time!

Lisa Mentor
Lisa
Posted
At first, you are better off eating fresh foods you prepare yourself. But I hit spots where I was away from home and had to find something to eat. It's better to be prepared, take a lunch, stash some Lara bars. One trick I use now when traveling (by car) is to stop by a Kroger deli counter and order a 1/4 lb. of Boars Head and pick up some fresh fruit to go with it. All Boars Head meat is gluten-free, you just have to ask the deli person to clean the cutter before slicing yours. One thing I've always been pleasantly surprised on is how helpful and kind people are when you let them know what you need.

We all know Outback Steakhouse and PF Chang's are Celiac friendly and have gluten-free menus onlne. So does Chili's (Open Original Shared Link) and several others.

If you decide to try fast food, be aware that you're safer talking to a manager and going at off hours. Even then, it's not as safe as an expensive restaurant. But sometimes, you need to know where you can get safe food when you aren't at home. (sometimes, fast food is all that's available) I keep a small folder in my car of the current gluten-free menus from restaurants and fast food places.

Wendy's Gluten Free Menu

Open Original Shared Link

McDonald's Gluten Free Menu

Open Original Shared Link

Sonic and Taco Bell, I've heard iffy things about them so I'm not listing them. Someone else may have a different view. I go to Taco Cabana and rarely have problems, but that may be that the local place knows me so well. Most of the places I've emailed have been very helpful.

Find out if you have a local Celiac Support Group, they can really help you through this and they know all the good local spots.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

:ph34r: Just want to throw a bit of caution regarding McD's fries - with a very, very extended debate, it was concluded that the fries should be attempted at your own risk.....now slowly backing out the door and ending this discussion regarding french fries.

NoGluGirl Contributor
NoGluGirl
Posted
:ph34r: Just want to throw a bit of caution regarding McD's fries - with a very, very extended debate, it was concluded that the fries should be attempted at your own risk.....now slowly backing out the door and ending this discussion regarding french fries.

Dear Momma Goose,

I won't risk it. I am too sensitive. I get too sick. It is so not worth the misery! I loved their fries, but think a safer bet is to get Todd Wilbur's Top Secret Recipes books and do the fries according the recipe, sans gluten. That is the smarter idea.

Sincerely,

NoGluGirl

Emily Elizabeth Enthusiast
Emily Elizabeth
Posted
Dear Karen,

I agree that Emily should eat purer foods when possible. In the beginning, your system is more sensitive. You have to do it a little at a time. I was ecstatic there were things I could have that are not something I have to cook myself! It is exhausting having to make everything if you are like me and on a budget. I must say that if people can buy everything organic, it is best. I would if I could!

Thank you for posting the gluten-free lists for Wendy's and MacDonald's! I do not know if I will ever be brave enough to attempt eating out, though! I am scared to death of cc! I have too violent a reaction to gluten! Unless I can actually stand over the people preparing the food, I don't feel I can trust them! They do not understand the protocol.

Sincerely,

NoGluGirl

I think both Karen and NoGluGirl are right about needing to eat purer foods. I think I was focusing so much on what I wasn't allowed to eat, that it made me want to eat it all the time. I spent most of my day either at multiple grocery stores or in my kitchen cooking (I still haven't found sweet rice flour - want to make a pie for dad's b'day). I have to say that I did start feeling better midday. For lunch I made an egg white omelet with spinach, red peppers, onions and mushrooms (delicious) and for dinner I made a pot roast with Kraft Catalina dressing potatoes, onions and carrots. Then I started preparing the Memorial Day food for tomorrow which was potato salad and corn macaroni salad made with gluten free mayonnaise of course. Then I made some vegetable bruschetta (not sure what I'm going to eat that on just yet).

I really had to fight the urge to eat processed foods like gluten free crackers and Tostitos though! I had broccoli and cauliflower instead and that calmed down my cravings. It's definitely worth it if I start feeling better. And like you all said, you can add things back in later (that's what I will keep telling myself). I just hope I can keep this up when I head back to work on Tuesday. Do you all think that home made gluten free bread will be okay or is that something that I should hold off on too? PB & J's are great to take to work for a quick fix to stop the fatigue and fogginess.

Thanks Karen for your list as well! That will be very helpful when I am on the road and have run out of lara bars (I love them!). It's also great to hear about the Boars Head meats too.

I'm not sure if I have diverted too far from the original topic here so I apologize if I have. I'm a newbie to the whole forum thing too! :unsure:

Emily Elizabeth Enthusiast
Emily Elizabeth
Posted
It's nice that there's a bunch of us starting gluten-free at the same time!

It definitely is. It's really helpful to hear that other people are going through the same thing with the same symptoms. Some of my family members are questioning whether or not I have celiac disease since I'm not miraculously better right away. I explain that many others have the same symptoms I do and have been diagnosed and are attempting to be gluten free as well. The advice about how to clean out your kitchen and get rid of hidden gluten in your lifestyle is helpful as well. I think some of my family members don't believe that even a small amount of gluten will cause me to remain sick. I get the feeling that they think I'm overly paranoid since I'm checking my shampoos and lipsticks and hairsprays. It's great to talk with people who understand and can provide helpful advice.

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      Inflammation and Menier’s disease link?

      By knitty kitty · Posted

      Oh, @MagsM, Sorry you had that happen with Niacin.  500mg is the maximum amount of Niacin one should take.  Niacin works hand in hand with Thiamine, so a big influx like that can imbalance thiamine if not supplemented at the same time.  All the B vitamins work together in concert.  Niacin in doses at 500 mg or above have been used by doctors to lower triglycerides levels and raise HDL, the good cholesterol.  Pharmaceuticals to do the same thing are more expensive and thus more profitable for physicians. Has your doctor tested you for H. Pylori?  An infection by H. Pylori can be tested for by your doctor.  H. Pylori can cause low tTg IgA results, too.   I would hold off on the microbiome test for now.  Your microbiome is going to change when you go gluten free.  Your microbiome will change when you start taking Thiamine.  Thiamine supplementation influences which microbes grow in the intestines, encouraging beneficial bacteria and getting rid of the bad ones.  Thiamine in the form Benfothiamine promotes intestinal healing, too.  Adopting the Autoimmune Protocol Diet (by Dr. Sarah Ballantyne, a Celiac herself) after diagnosis will also change your microbiome.  This is the best diet to heal and recover, IMO.   If you're going to have more testing done for vitamin deficiencies, don't take vitamin supplements beforehand, otherwise the tests will measure the vitamin supplements in your bloodstream and give false results.  Same thing will happen if you take B vitamin shots.  The supplements you mentioned (Arterosil HP and Vascanox HP) are herbal support and do not contain all eight B vitamins.  There's no harm in taking them, but I prefer a B Complex that contains all the B vitamins in activated forms like Life Extension's Bioactive Complete B Complex.  All the B vitamins work together in concert.  Magnesium is important to supplement as thiamine and magnesium make life sustaining enzymes together.  Do not buy supplements containing Thiamine Mononitrate because it is not biologically active.  It is very hard for the body to utilize.  Most of it (70%) passes out unused.    Yes, my Meniere's disease has not returned.  I was deficient in Vitamin D.  I took high doses of Vitamin D 3 to correct the deficiency quickly.  I also took TTFD (tetrahydrofurfuryl disulfide) which is a form of thiamine different from Benfotiamine.  TTFD can cross the blood brain barrier without a carrier, so it can get into the brain very easily.  TTFD helps the Vagus nerve function.  The Vagus nerve regulates the ears and balance, and also the digestive system.  I like Allithiamine by Ecological Formulas.  I also like Thiamax by Objective Nutrients.  You should have improvements within a hour with TTFD.  TTFD is much stronger, so lower doses will give amazing benefits (50-200 mg).   I hope this helps give you some direction to take on your journey!
    • MagsM
      Inflammation and Menier’s disease link?

      By MagsM · Posted

      Thank you so much for this in depth analysis. I am currently taking Vit D3/K2 5000IU daily.i started taking a flushing Niacin but foolishly took a 500mg tab and nearly passed out! I have just ordered a gut microbiome genome test and it will be interesting to see what my current balance of microbes are. After I finish diagnosis I will definitely go gluten free. Diagnosis will inform exactly how strict I’ll need to be regarding cross contamination etc. my focus will be on healing the gut. I have also been focusing on the oral microbiome - cutting out FL and using more natural products as well as daily oil pulling. I read from some of your other forum entries about Benfothiamine and I’ll definitely order that. I’ll make sure my doc orders more detailed vitamin and mineral panel plus total IGA as well as the DGP-IGA and DGP-IGG tests. We will see if I can get the endoscopic biopsy done. Do you think I should request Vitamin B shots to get me started?  My daily vitamin protocol will likely be VitD/K2 5000IU, Benfothiamin 300x2, Niacin (flushing) 50mg working up to 300mg. I also take a EPA/DHA as well as some vascular support (Arterosil HP and Vascanox HP) as well as Magnesium at night. Which B complex brand do you like? I will see what the gut microbiome test comes back with. I’m sure they will try to sell me pre/probiotics and maybe some digestive enzymes. What are you thought on those? I’m curious if you managed to go into full remission from your Ménière’s disease? Thank you so much for your thoughtful insight. I know that building back up my gut health and immune health will help in so many ways as well as protecting me from many other major diseases as I go into my 60s and beyond. 
    • Scott Adams
      Any bad experience with King Arthur Gluten-free bread flour

      By Scott Adams · Posted

      You are right! The logo the have on their packages got me confused--it looks like they are less than 20ppm, not certified GF. Thanks for catching that! My brain also zeroed in on this "less than 10ppm" but I should have seen the rest...
    • Wheatwacked
      Still unsure.....

      By Wheatwacked · Posted

      Zinc glyconate lozenges (Cold Eeze) helps fight off viral respiratory infections by coating the mucous membrane cells to protect them from virus.  Zinc is an antiviral essential mineral. Choline deficieicy can be the cause of Non Alcoholic Fatty Liver Disease.  It is estimated by some experts that less than 10% eat the minimum RDA of around 450 mg.  It has also been connected to gallbladder disease.  Brain fog and high homosystein blood level is an independant indicator of cardiovascular disease. Eggs and red meat are the primary sources.  Three eggs or 10 cups of cooked brocolli a day.  Low vitamin D is a common denominator of autoimmune disease.  Is it a contributing factor or a result? I think that low vitamin D is maybe the main contributing factor.  Low vitamin D allows the immune system to run amuck. I would like to point out the many diagnosed with Celiac Disease went through several misdiagnoses, like gall bladder disease, and were repeatedly tested negative and then one day tested positive. Regardless of your diagnosis, you should avoid gluten, you mention it in your first post : "When I eat gluten I get a lot of mucus with my stool and most of the times it’s quite thin. As soon as I take gluten away from my diet my stool becomes normal". It can take six months to several years to heal completely.  How long I believe is directly related to how quickly you identify deficiencies and correct. Essential to my recovery:  Thiamine, 10,000 IU vitamin D3 a day, maintaining 25(OH)D at 80 ng/dl (200 nmole/L), 600 mcg Liquid Iodine, Phosphatidyl Choline.  And of course: Gluten Free.
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