Jump to content
Celiac Disease FAQ | This site uses cookies GDPR notice. Read more... ×
  • Sign Up
0
thecatlady

New Member, New Diagnosis, Upset And Confused!

Rate this topic

Recommended Posts

I've been having various issues over the last couple of years and being treated for Orthastatic Intolerance. I also was having other tests results coming back abnormal and finally saw a Rheumatologist who had me tested for Celiac Disease.

My Tissue Transglutaminase IGA came back positive.

She is putting me on a 3 month gluten-free diet and boy, is this really stressful. Our family is vegetarian (primarily) and a big pasta/bread/wheat/battered food bunch.

I've also had hives from Cashews (even though I allergy tested negative for nuts) so have been told to avoid them in case.

I went to Trader Joe's and Safeway today and there just aren't a lot of gluten-free foods! And some items that say wheat-free are manufactured on a line with wheat, so its a no-no.

I'm trying to research the board and realize I have to start incorporating fresh fruit, vegetables, and items like Salmon and Chicken. I also found Gluten-Free Chex and Polenta to try. This is a whole new lifestyle and I want to feel better (I do feel not so great now)...but I am at a loss how to begin the diet.

The first thing I did was check my favorite daily 'treat' - my Starbucks' non-fat iced Vanilla Latte. I'm glad those are on the OK list. I just don't have them stir it (in case the spoon touches the Chips or Gingerbread mix, just in case).

Otherwise, I'm almost to a migraine trying to even deal with all this. Where do I begin?

Share this post


Link to post
Share on other sites

Welcome to the forum.

I hope that others will chime in with their ideas for you, especially the vegetarians amongst us. Yes, you will have to make fruit and vegetables the backbone of your diet (and they are so good for you anyway!!) You might try a vegetable stir fry over rice, with chicken, shrimp, tofu, your choice for protein). I am sure you will find bags of frozen vegetable mixes in the freezer case and you can add onion, mushrooms, whatever you want. Lots of salads with boiled eggs, avocados, shrimp, chicken. Roast a whole chicken and roast some root vegetables along with it -- squash, parsnip, onions, sweet potato, potato, toss in some zucchini , tomatoes and/or mushrooms near the end, the choice and combinations are endless. Sprinkle with olive oil and season with garlic and pepper before roasting.. You will have to experiment a bit with breads. Some of the mixes are good--lots of folks use Bobs Red Mill; and then there are the premade breads (usually in the freezer) like Kinnikinnick. Once you get to learn what you like in the way of flavors you can consider baking your own. Pamelas Baking Mix is a good basic mix for anything from cookies to pancakes to cakes to quick breads.

Be sure to check labels on everything, like ham, yogurt, sauces, salad dressings; you will be amazed where gluten hides. There are list on the forum here if you search "gluten free foods" of companies and their products.

So that is just a quick "get you started thinking" post. Good luck on your new adventure :)

Share this post


Link to post
Share on other sites

Thank you so much! I've now purchased my first dozen eggs in quite a while...

I also bought a new skillet (have to learn to make Omelets and Salmon!)...and I have a bread maker I've never used. Are there Gluten-Free mixes for that? I always felt a bit guilty not having used it and now I'm glad I didn't. It's not contaminated! LOL

I'm searching away and going through my lipsticks/lipglosses to see what is safe. Fortunately most are OK so far!

I don't know how much to worry about foundation/eyeshadow/blush/etc. I was told and have read it can't really be absorbed through the skin so I'm not worrying about things I don't put around my mouth so far. I'm a bit of a make-up fan, so this news was moderately detrimental until I realized my fave stuff is OK so far!

Share this post


Link to post
Share on other sites
.and I have a bread maker I've never used. Are there Gluten-Free mixes for that?

Yes, there are lots of mixes. Bobs Red Mill are he most popular ones, it seems, but there is also Gluten Free Pantry. Namaste, I can't remember them all now because I am back in New Zealand now and our products are different.

I don't use that much makeup so it was not a big issue for me, but shampoo and conditioner, etc., lip gloss, toothpaste, I bet you have the whole list. Most hair products seem to have hydrolyzed wheat protein :( You will soon get the hang of things. Sounds like you have made a good start :)

Share this post


Link to post
Share on other sites

I am new to this also - welcome :)

As for Traders Joe's, I was very disappointed. I went last week, picked up a few things that we labeled (at the store) gluten free, got the home, only to find out that they were made on shared equipment. Now, those food items are just sitting in my pantry, until I can get back to the store and return them.

I had much better luck at Mustard Seed (which maybe a local place).

Check out http://www.glutenfreeinfo.com/Diet/S-FoodList.htm - it seems like a great list of foods that are gluten-free.

Good luck!

Susan

Share this post


Link to post
Share on other sites

Welcome! I, too, am new to this. Just diagnosed a few weeks ago. I too, have felt depressed and anxious but have been working through the grief stages and moving on the living and loving stages.

I found the following books really, really helpful: Living Gluten-Free for Dummies and Gluten-Free Cooking for Dummies. Got them on (Company Name Removed - They Spammed This Forum and are Banned). I love the "Dummies" book line. These gluten-free books are written by someone who really knows and has been living the gluten-free life.

I don't know if you have Whole Foods in your neighborhood. They have a really strong commitment to gluten free products. Things are carefully labeled and researched. They keep a list of gluten-free products on their website, specific to the geographic region and store. Check them out! For great bread and bakery items, check out Kinnikinnick - they sell in retail health food stores like Whole Foods and they also do online sales. The Gluten-Free Mall on this website has good products, too. If you love pasta, then check out DeBoles rice pastas and corn pastas - all gluten-free and I like them a lot. Kroger and Publix and other regular grocery stores carry the line, though you may have to ask the store manager to stock the gluten free products for you - most managers will do that. Lundbergh Farms has great gluten-free and dairy free risotto mixes as well as rice pastas that are quite yummy.

Classico pasta sauce clearly labels their products that are gluten free and they do use good manufacturing practices to segregate and minimize cross-contamination.

Maggiano's Restaurant has gluten-free pasta and a whole gluten-free menu. You need to call ahead to let them know you are coming but they will be happy to accommodate you an the gluten-free pastas are good. Don't know if you have a Pizza Fusion restaurant in your area (it's a smaller chain) but if you do, they have a really good gluten-free pizza crust and sauce, as well as soy cheese. They also have great regular pizza for the non gluten-free people.

I hope this helps you! Keep posting and reading here. It's been enormously helpful to me and could be for you, too!!!

Share this post


Link to post
Share on other sites

My son and his cousin are both pretty sensitive celiacs and we have had no problems with the Trader Joe's stuff that has no gluten ingredients made in shared manufacturing facilities. As long as they use good manufacturing practices, you shouldn't have an issue.

It may work for you, or it may not.

TJ's also has very good gluten free pasta. Nobody in your family will notice the difference. You can also use cornmeal/cornflour to batter foods.

Good luck!

Share this post


Link to post
Share on other sites

I've Gluten Free for about 10 days....10 days of hell, shock, depression, anger, but I feel better just having the bloating gone ! Ever minute is consumed with gluten free I've given myself a headache. Start with reading, reading, and checking everything you put in your mouth....We will all survive...

I've been having various issues over the last couple of years and being treated for Orthastatic Intolerance. I also was having other tests results coming back abnormal and finally saw a Rheumatologist who had me tested for Celiac Disease.

My Tissue Transglutaminase IGA came back positive.

She is putting me on a 3 month gluten-free diet and boy, is this really stressful. Our family is vegetarian (primarily) and a big pasta/bread/wheat/battered food bunch.

I've also had hives from Cashews (even though I allergy tested negative for nuts) so have been told to avoid them in case.

I went to Trader Joe's and Safeway today and there just aren't a lot of gluten-free foods! And some items that say wheat-free are manufactured on a line with wheat, so its a no-no.

I'm trying to research the board and realize I have to start incorporating fresh fruit, vegetables, and items like Salmon and Chicken. I also found Gluten-Free Chex and Polenta to try. This is a whole new lifestyle and I want to feel better (I do feel not so great now)...but I am at a loss how to begin the diet.

The first thing I did was check my favorite daily 'treat' - my Starbucks' non-fat iced Vanilla Latte. I'm glad those are on the OK list. I just don't have them stir it (in case the spoon touches the Chips or Gingerbread mix, just in case).

Otherwise, I'm almost to a migraine trying to even deal with all this. Where do I begin?

Share this post


Link to post
Share on other sites
I've been having various issues over the last couple of years and being treated for Orthastatic Intolerance. I also was having other tests results coming back abnormal and finally saw a Rheumatologist who had me tested for Celiac Disease.

My Tissue Transglutaminase IGA came back positive.

She is putting me on a 3 month gluten-free diet and boy, is this really stressful. Our family is vegetarian (primarily) and a big pasta/bread/wheat/battered food bunch.

I've also had hives from Cashews (even though I allergy tested negative for nuts) so have been told to avoid them in case.

I went to Trader Joe's and Safeway today and there just aren't a lot of gluten-free foods! And some items that say wheat-free are manufactured on a line with wheat, so its a no-no.

I'm trying to research the board and realize I have to start incorporating fresh fruit, vegetables, and items like Salmon and Chicken. I also found Gluten-Free Chex and Polenta to try. This is a whole new lifestyle and I want to feel better (I do feel not so great now)...but I am at a loss how to begin the diet.

The first thing I did was check my favorite daily 'treat' - my Starbucks' non-fat iced Vanilla Latte. I'm glad those are on the OK list. I just don't have them stir it (in case the spoon touches the Chips or Gingerbread mix, just in case).

Otherwise, I'm almost to a migraine trying to even deal with all this. Where do I begin?

Have you had a dexascan done yet to check if you have osteopenia or osteoporosis? I was recently diagnosed with Celiac Disease and Osteopenia (age 40). You may need additional calcium too on top of watching what you eat!

Share this post


Link to post
Share on other sites

You can do gluten free vegetarian, but it's true that to keep the diet well balanced, you need to not rely just on grain. Whole veggies (which you can still fry in gluten free flours, if you want), gluten free grains (corn, rice, amaranth, quinoa, teff, buckwheat, millet, sorghum), legumes, nuts and seeds, dairy and eggs if you're lacto-ovo, and fruits can all make lots of good, and complete meals.

You may find that what you really need are some good cookbooks that have recipes that are either already gluten free or easy to convert, and that really inspires you to get cooking. Plenty of recipes are either naturally gluten free, or trivial to convert - things thickened with flour or use soy sauce or use pasta, that are otherwise gluten free, for instance, you can just use a gluten-free thickener, like cornstarch, and gluten-free soy sauce like San-J's Tamari or a gluten-free pasta like Tinkyada.

What comes to mind (because I make them fairly frequently) to cook that is easily vegetarian and gluten free:

Mexican: fajitas, enchiladas, heuvos rancheros

Asian: veggie stir fry, summer rolls (rice paper wraps served cold), curries, phad thai, veggie sushi

Italian: pasta w/ tomato and veggie sauce, risottos, polenta, pasta salads, frittata

Mediterranean: lentil soup, curried vegetables with chick peas

Other: veggie shepherds pie, veggie stew, vegetable-bean soup, veggie kabobs, bean salad

(Of course, many of these can be made w/ meat as well - which is how I tend to make them as I'm gluten and dairy intolerant, hypoglycemic, and currently pregnant.)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Top Posters +

  • Upcoming Events

    • February 27, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
  • Member Statistics

    • Total Members
      86,547
    • Most Online
      4,125

    Newest Member
    Rednal
    Joined
  • Forum Statistics

    • Total Topics
      111,818
    • Total Posts
      955,916
  • Who's Online (See full list)

  • Forum Discussions

    Thank you so much, cyclinglady. Yes, very helpful! I want to tell her the exact tests I want.  I am thinking I should request: tTG-IgA Total serum IgA Do you agree? I am on a super high-deductible health plan, so I end up paying for all of these, so I don't want to go overboard while still being as sure as I can be. Not related to celiac (as far as I know) but I was also reminded that my sister has the MTHFR gene mutation (homozygous C variant), so I need to ask her to be tested for that as well... She is going to think I am nuts, and that is fine. ;)
    Oh no!  One celiac test?  Only one was given?  The TTG IgA, I assume or you just got the Immunoglobulin A (IGA) test?  You should insist on the complete celiac panel.  You should also know that  some people with DH do not test positive on any of the celiac blood tests.  If your skin biopsies are negative, make sure they biopsy was taken correctly — not on the rash, but adjacent.  This mistake is make ALL THE TIME by dermatologists.   Because of what you disclosed in another post, you should consider asking a Gastroenterologist and not your GP (who seems to know little about celiac disease and testing) why you had small intestinal damage (per initial biopsies) went gluten free and later a second biopsy revealed a healed small intestine, yet you were not given a celiac diagnosis.   Later, it seems you started consuming gluten again or were getting traces of gluten into your diet, and now may have developed or worsened your DH. Quote: “Hi, I have been trying to get a celiac diagnosis for awhile now. I had an endoscopy years ago that showed flatted villi but the biopsy said "possible sprue or possible duodonitis." I went g.f. and had another test a few years later. The villi were normal but I had what I thought was a d.h. rash. The dermatologist said it did not look like d.h. and said it was just eczema.  To test myself, I started eating gluten again. I have occasional bowel issues but not like I had years ago.” Now my legs look like I have d.h. again.” You can go gluten free and safely prepare gluten in your house.  I did this for 12 years when my hubby was gluten free and before I was shockingly diagnosed.  You just can not ingest gluten.  The only thing you need to avoid is flour because flour has been documented to stay in the air or fall on surfaces for up to 24 hours (one reason not to have a coffee in a bakery or donut shop — sit outside!)  You can cook pasta, make sandwiches, open a box of cookies....whatever!  Just do not use loose flour.   If he needs a birthday cake, have a friend bake it at their house.  Or he may love a gluten-free cake.  Soon I will be baking my kid a gluten-free Chocolate Mayonnaise Cake for her birthday and she is not celiac!  She actually prefers it to a gluten-containing bakery cake!   There are plenty of alternate grains besides wheat, barley and rye for your son.  Think outside the box.   I have said this before you should get your son tested for celiac disease.  I have allergies and I never had a positive for wheat.  Wheat allergies and celiac disease are separate issues.  He may very well have celiac disease.  Why?  Because his mom had a positive intestinal biopsy and went gluten free and then had a repeat intestinal biopsy and healed.  I am not a doctor, but that is pretty damning evidence.  Maybe you need to consult with an attorney who specializes in malpractice.  You appear to have been put through a diagnostic nightmare.   I hope this helps.  Mothers need to take care of themselves first, so that they can help their children.  It is like the oxygen masks on an airplane.  Adults are instructed to put their mask on first before assisting others (e.g. children).        
    Some people with DH do lousy on the blood antibody tests.  They hoard all their gliaden antibodies in their skin instead of their bloodstream.  So they may test negative on blood antibodies but still have plenty of antibodies in the skin.  Sometimes they even flunk the endoscopy tests for the same reason.
  • Blog Entries

  • Blog Statistics

    • Total Blogs
      1,158
    • Total Entries
      2,010
×