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Introduction

Odysseus

By Odysseus
in Coping with Celiac Disease

Recommended Posts

Odysseus Newbie
Odysseus
Posted

Hello all, I am new here to the forum. I believe that I have self diagnossed myself with celiac disease. After almost two weeks I have to say I feel so much better. I am 40yrs old and it seems that I have been fighting this most of my life. I hope to learn all that I can from this site. Any start off pointers would be very helpful. Such as where to buy food from, what web sites etc. Things that I wouldnt normaly think not to eat, that kind of stuff. Thanks in advance.

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eatmeat4good Enthusiast
eatmeat4good
Posted

Welcome and congratulations for saving your own life! I wish I had figured it out at 40 like you did! Having said that, the first mistakes I made were eating in restaurants and thinking I could order "gluten free." I couldn't. Kissing someone who has eaten Gluten WILL make you sick, it's sad, but true. Lipstick either has wheat germ oil or CC issues and can make you sick unless you specifically buy gluten free. Change your toothbrush...now and frequently. Check medicines and vitamins. Soy sauce is "wheat sauce" unless you buy gluten free. There is a mainstream brand that is not gluten/wheat, but I don't remember the name. Read all labels. If you hand a cookie to a child, wash your hands. Hand sanitizer will do nothing to gluten except make sure that the gluten you eat is very clean, but it will still make you sick. Breathing flour in can make you sick because it hits the mucous membranes and makes it's way to your stomach. These are a few of my favorite mistakes. Glad you are feeling better. It sounds like you are off to a good start! Oh, and Udi's bread is pretty good. I didn't buy any other after reading all the reviews. :)

krystynycole Contributor
krystynycole
Posted

welcome! I as well am self diagnosed, which can be hard because there is no doctor to help you out through the process in any way. However you've found the right place, I've learned so much just from reading other peoples questions and responses.

First, I'd advise starting to eat just naturally gluten free food. It's the best way to stay positive about your new diet. Stick to the outside of your grocery store eating fresh fruit, veggies, and meats. Then slowly add in other "adapted" gluten-free foods.

Second...check out different food blogs (many on this site) for meal ideas. Also, I enjoy many recipes at www.bettycrocker.com. They make gluten-free bisquick and have a lot of recipe ideas that my non gluten-free husband even raves about!

sa1937 Community Regular
sa1937
Posted

Welcome, Odysseys! In addition to what others have said, there are some books that you might find helpful:

Celiac Disease: A Hidden Epidemic by Dr. Peter Green and

Living Gluten-Free for Dummies by Danna Korn

The First Year: Celiac Disease and Living Gluten-Free by Jules Shepard

And if you shop the outer rim of the store (foregoing processed foods), it's much easier and better in the beginning. Pretty soon we get really good at label reading and can spot ingredients at a glance that we need to avoid. My first shopping trip was a nightware and took forever. After awhile It becomes almost automatic to know what we can and cannot have. (We still have to read labels though as ingredients can change in a heartbeat.

And keep reading this forum as I got so much good info as I was in the learning process. Plus check out the Gluten-Free Recipes section and post any questions you may have.

BaldurBen Newbie
BaldurBen
Posted

Congrats on what sounds like correct self-diagnosis! Eating naturally gluten-free foods such as fruits and veggies is good advice. Read all labels and get familiar with the Safe and Unsafe lists on this site. When starting out, I was surprised to learn that mustard, soy sauce, and black liqorice for example can contain gluten.

One of my favorite ways to start the morning is to make a smoothie from rice milk, fresh fruit juice, frozen blueberries and strawberries, plus one scoop of Thorne MediClear protein powder. Toasted Udi's gluten-free bagels plus fresh cream cheese is another favorite.

Picazzo's is my favorite gluten-free pizza place, and whatever I can't get at my local supermarket I get from Whole Foods or Sprouts. Glutino and Udi's are two of my favorite gluten-free food labels. Also, you can get a lot of recipes, articles, and other good advice by following gluten-free people on Twitter. Finally, if you drink, even in moderation, you might consider giving up alcohol altogether. I never have as much energy as when I do my annual three-week detox course, which excludes alcohol.

Good luck!

Loey Rising Star
Loey
Posted

Hello all, I am new here to the forum. I believe that I have self diagnossed myself with celiac disease. After almost two weeks I have to say I feel so much better. I am 40yrs old and it seems that I have been fighting this most of my life. I hope to learn all that I can from this site. Any start off pointers would be very helpful. Such as where to buy food from, what web sites etc. Things that I wouldnt normaly think not to eat, that kind of stuff. Thanks in advance.

Welcome to our wonderful group. I joined in October 2010 and I have to say I have never met a more supportive, intelligent and kind group of people anywhere in my life. I don't know what I'd do without this forum. I'm copy and pasting two links you might find useful. Remember, regardless of what a package says ALWAYS check the ingredients!!! I hope these help.

Loey

Open Original Shared Link

Open Original Shared Link

Odysseus Newbie
Odysseus
Posted
  • Author

Thanks again everyone for all the encouraging words and good ideas. I never would have thought of about breathing in flour or touching cookies or lipstick. Yesterday my daughters and I took my wife out for her birthday to eat at Red Lobster. Wasnt sure what I would be able to eat. I asked the staff if they had a gluten free menu and to there credit they gave me an allergen menu that showed what contained gluten and what might be cross contaminated. There were a few things on there but I read wrong and ended up with something that was cc. I picked wood grilled fresh fish with broccoli and mashed potatoes. Along with a cesar salad. Oh well, I am on the learning curve. Afterwards we stopped by the store and found some gluten free items. We bought King Arthur and Gluten free pantery flour. Some cookies, bisquick and Betty Crocker chocolate cake which was really good. Also thanks for the books ideas and the links. I will def. check them out. One last thing...where does everyone get the udi's bread. Online order???

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notme Experienced
notme
Posted

if you have an earth fare, they sell the udi's bread. i have a little specialty store that carries it as well. recently i have tried (o my gosh trying to get pasta that is 'right'!!) tinkyada pasta - another brand that is AWESOME!!! 'against the grain' makes baguette bread that is pretty good, i use that to make any kind of sandwich that needs a roll like cheesesteak or cubanos. food tastes so much better when it doesn't hurt :)

Odysseus Newbie
Odysseus
Posted
  • Author

if you have an earth fare, they sell the udi's bread. i have a little specialty store that carries it as well. recently i have tried (o my gosh trying to get pasta that is 'right'!!) tinkyada pasta - another brand that is AWESOME!!! 'against the grain' makes baguette bread that is pretty good, i use that to make any kind of sandwich that needs a roll like cheesesteak or cubanos. food tastes so much better when it doesn't hurt :)

Thanks for the info. I have never heard of a earth fare so I'll have to google that. Yeah, it does tastes so much better when it doesn't hurt. I always thought "thats just the way it is". Not anymore.

eatmeat4good Enthusiast
eatmeat4good
Posted

Most health food stores carry Udi's I think.

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    • knitty kitty
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      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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