Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New Here, Newly Discovered Gluten Problems


HealingIrish

Recommended Posts

HealingIrish Newbie

Hello all :)

I'm Kelly, and I'm on day three of officially knowing I have a wheat/gluten intolerance. I haven't been tested for celiac however.

I was on an anti-inflammation/elimination diet for over a month, after having near constant stomach problems, low energy, and constant eczema and skin break outs for a few years.

Traditional medicine was no help. I had a colonoscopy, and the GI doc said, "well, we don't see anything abnormal, you must be fine." Grr. That did nothing to explain all the GI issues I was having. Same with dermatologists..."you just need to use the steroid medication and keep your skin moisturized." Grr. But whyy am I having these problems, and how do I fix them?

I went to a naturopath, who put me on the elimination diet. For the first time in a really, really long time, my stomach didn't hurt, my energy was better, and finally finally, my skin started to clear up (after several attempts to go off the medicine, which would make my skin break out).

I started adding things back in, dairy, tomatoes, and I was fine. On my wheat add-in day, I had falafel and a white roll, and wham! Stomach problems back, energy gone, skin completely broke out again. It has taken me till today for things to start calming down.

It also seems that I have a problem with processed sugar. I had a very little bit (about three bites) of ice cream, and had immediate stomach problems. I had a spelt cookie, and I reacted immediately to that, even though I've had spelt pizza crust and been ok. Is this common, to have problems with processed sugar as well? At this point, I am back to avoiding processed sugars (honey, maple syrup are fine).

I'm looking forward to being wheat/gluten free and feeling good. I'm also looking forward to learning from all of you on this journey.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Lisa Mentor

Hey Kelly,

Welcome....This is a wonderful place for support and education.

Viola 1 Rookie

Welcome to the board ... it's a good place to learn. There are lots of super, helpful people here. :D

tarnalberry Community Regular

Welcome.

It sounds like you've been through a lot, and I'm not really sure what to say, other than to make sure you know that spelt is NOT gluten free.

Susanna Newbie

Kelly--Know that many here never get a firm diagnosis. Celiac is a difficult disease to diagnose. We celiacs present with a crazy array of symptoms, and the available tests aren't foolproof. So, many folks you'll read on these boards finally just commit to the gluten-free diet, and viola!--feel better. If you are going to give it a go, I recommend you commit to a 3 month trial period, where you are really strictly avoiding gluten--not just in the obvious dietary sources, but hidden gluten too (check your shampoos, lotions and other personal care products, lip balms, vitamins and supplements, don't take communion wafers, and don't lick any envelopes. Here are some tips to get you started, which I'm pasting in from a posting I recently placed for another newbie:

1. Know that you will grieve your old favorite gluten-filled foods. I actually tear up when I see a brioche sometimes. Grieving is normal. People around you will eat treats you can't have and you will feel sad and isolated. Strategy: stock your car, office, purse, backpack, secret drawer at home with gluten-free treats you can reach for any time you are feeling deprived. This really helped me. I recommend Baby Ruth Bars, Snicker Bars, Lara Bars, Dove Dark Chocolate, meringue cookies, macaroon cookies (read labels), Butterfinger, Reeses Peanut Butter Cups. You get the idea.

2. Know that it will take time (months, probably) to figure out what to eat (it took me 6 mos.) and during this time, it'll be kind of a daily challenge to plan meals. Every time you go to the store it'll be a challenge to choose groceries. Strategy: plan on an hour--don't bring kids or friends. Go the bathroom before you start grocery shopping. Bring your reading glasses--read every label. This gets a lot easier after a while. The good news is, THIS GETS MUCH BETTER OVER THE NEXT SEVERAL MONTHS AS YOU GET USED TO TO THE DIET.

3. It may take a while for your gut to heal, depending on how damaged it was at the time you went gluten free. So, you are going to have to be patient with your body--some people feel better immediately after going gluten-free, but most of us take longer than that. Don't give up if you don't see instant results. Strategy: Maximize your general health by getting enough rest, water, exercise, and limiting stress. Maximize your digestive health by limiting foods that are hard on the gastrointestinal tract until you're feeling better: limit irritants like dairy, caffeine, alcohol, and fried foods--these are all hard to digest--go back to them when you feel your gut is recovering.

4. Accept right now that it will be YOUR job to teach those around you about your diet--they will NOT figure it out on their own. I mean, if you don't advocate for yourself, why should anybody else ???? If you're not already an assertive person, this will be good training for you.

5. Here are some meal ideas: ALWAYS READ LABELS!

Breakfast:

eggs, turkey bacon, gluten-free cereal, cream of rice cereal, rice pudding with raisins-yum! For grab n' go breakfast, hard boiled eggs, piece of fruit, cottage cheese and yogurt stirred together. Most yogurts are gluten-free. You will find some gluten-free cold cereals at health food stores.

Lunch:

cold cuts and cheese rolled up in a lettuce leaf

rice cake with peanut butter and raisins, or almond butter and dried cherries

rice cake with cottage cheese and cherry tomatoes

beef jerkey (read labels--the ones with soy sauce have wheat and these aren't OK. Bridgford Original is OK, Kroger Peppered Beef jerkey is OK) I have this in my desk at work and it is a lifesaver--great for camping, too.

Fruit: fresh, canned, dried

Tortilla chips and bean dip

Hard boiled eggs

leftovers from last night

Several Progresso soups are gluten-free: Creamy mushroom (a lifesaver for me in cooking quick dinners), chicken and wild rice, etc. READ LABELS.

Snacks:

Fritos

Cheetos

Tortilla chips

Most potato chips

popcorn

mixed nuts

trail mix (read labels)

gluten-free candies I mentioned above

Lara Bars

Some flavors of Zone Bars (Fudge graham, chocolate coconut crunch, chocolate almond raisin)

Dinner:

Main dishes: omelets, baked salmon with olive oil/salt/pepper, baked chicken with Progresso creamy mushroom soup with a little sour cream stirred in and poured over, grilled hamburgers (use giant lettuce leaf as a wrap, tacos with corn tortillas, split pea soup, etc.

Starchy sides: baked potatoes, any other kind of potatoes, too) rice pilat, polenta, grits, steamed squash, creamed corn.

Veggies--steamed, with a little butter on top is yummy.

Dessert: chocolate mousse, creme brulee, rice pudding, ice cream (read labels--avoid ice creams like cookie and cream, birthday cake, cookie dough flavors, but all the chocolate, vanilla, sherbets, coffee flavors are generally OK), chocolate dipped strawberries, flan, custard, most puddings, gelatin.

Convenience foods:

Amy's rice crust pizza

Many Amy's frozen entrees are gluten-free--read labels--I get these at Kroger, Safeway, and the health food store

Thai kitchen--many of their rice mixes are gluten-free, and you can get these in mainstream grocery stores

gluten-free bread mixes make great gluten-free bread--if you don't have a bread machine, get one--you can usually pick one up for cheap at second hand stores.

Good luck!

Susanna

confused Community Regular
Kelly--Know that many here never get a firm diagnosis. Celiac is a difficult disease to diagnose. We celiacs present with a crazy array of symptoms, and the available tests aren't foolproof. So, many folks you'll read on these boards finally just commit to the gluten-free diet, and viola!--feel better. If you are going to give it a go, I recommend you commit to a 3 month trial period, where you are really strictly avoiding gluten--not just in the obvious dietary sources, but hidden gluten too (check your shampoos, lotions and other personal care products, lip balms, vitamins and supplements, don't take communion wafers, and don't lick any envelopes. Here are some tips to get you started, which I'm pasting in from a posting I recently placed for another newbie:

1. Know that you will grieve your old favorite gluten-filled foods. I actually tear up when I see a brioche sometimes. Grieving is normal. People around you will eat treats you can't have and you will feel sad and isolated. Strategy: stock your car, office, purse, backpack, secret drawer at home with gluten-free treats you can reach for any time you are feeling deprived. This really helped me. I recommend Baby Ruth Bars, Snicker Bars, Lara Bars, Dove Dark Chocolate, meringue cookies, macaroon cookies (read labels), Butterfinger, Reeses Peanut Butter Cups. You get the idea.

2. Know that it will take time (months, probably) to figure out what to eat (it took me 6 mos.) and during this time, it'll be kind of a daily challenge to plan meals. Every time you go to the store it'll be a challenge to choose groceries. Strategy: plan on an hour--don't bring kids or friends. Go the bathroom before you start grocery shopping. Bring your reading glasses--read every label. This gets a lot easier after a while. The good news is, THIS GETS MUCH BETTER OVER THE NEXT SEVERAL MONTHS AS YOU GET USED TO TO THE DIET.

3. It may take a while for your gut to heal, depending on how damaged it was at the time you went gluten free. So, you are going to have to be patient with your body--some people feel better immediately after going gluten-free, but most of us take longer than that. Don't give up if you don't see instant results. Strategy: Maximize your general health by getting enough rest, water, exercise, and limiting stress. Maximize your digestive health by limiting foods that are hard on the gastrointestinal tract until you're feeling better: limit irritants like dairy, caffeine, alcohol, and fried foods--these are all hard to digest--go back to them when you feel your gut is recovering.

4. Accept right now that it will be YOUR job to teach those around you about your diet--they will NOT figure it out on their own. I mean, if you don't advocate for yourself, why should anybody else ???? If you're not already an assertive person, this will be good training for you.

5. Here are some meal ideas: ALWAYS READ LABELS!

Breakfast:

eggs, turkey bacon, gluten-free cereal, cream of rice cereal, rice pudding with raisins-yum! For grab n' go breakfast, hard boiled eggs, piece of fruit, cottage cheese and yogurt stirred together. Most yogurts are gluten-free. You will find some gluten-free cold cereals at health food stores.

Lunch:

cold cuts and cheese rolled up in a lettuce leaf

rice cake with peanut butter and raisins, or almond butter and dried cherries

rice cake with cottage cheese and cherry tomatoes

beef jerkey (read labels--the ones with soy sauce have wheat and these aren't OK. Bridgford Original is OK, Kroger Peppered Beef jerkey is OK) I have this in my desk at work and it is a lifesaver--great for camping, too.

Fruit: fresh, canned, dried

Tortilla chips and bean dip

Hard boiled eggs

leftovers from last night

Several Progresso soups are gluten-free: Creamy mushroom (a lifesaver for me in cooking quick dinners), chicken and wild rice, etc. READ LABELS.

Snacks:

Fritos

Cheetos

Tortilla chips

Most potato chips

popcorn

mixed nuts

trail mix (read labels)

gluten-free candies I mentioned above

Lara Bars

Some flavors of Zone Bars (Fudge graham, chocolate coconut crunch, chocolate almond raisin)

Dinner:

Main dishes: omelets, baked salmon with olive oil/salt/pepper, baked chicken with Progresso creamy mushroom soup with a little sour cream stirred in and poured over, grilled hamburgers (use giant lettuce leaf as a wrap, tacos with corn tortillas, split pea soup, etc.

Starchy sides: baked potatoes, any other kind of potatoes, too) rice pilat, polenta, grits, steamed squash, creamed corn.

Veggies--steamed, with a little butter on top is yummy.

Dessert: chocolate mousse, creme brulee, rice pudding, ice cream (read labels--avoid ice creams like cookie and cream, birthday cake, cookie dough flavors, but all the chocolate, vanilla, sherbets, coffee flavors are generally OK), chocolate dipped strawberries, flan, custard, most puddings, gelatin.

Convenience foods:

Amy's rice crust pizza

Many Amy's frozen entrees are gluten-free--read labels--I get these at Kroger, Safeway, and the health food store

Thai kitchen--many of their rice mixes are gluten-free, and you can get these in mainstream grocery stores

gluten-free bread mixes make great gluten-free bread--if you don't have a bread machine, get one--you can usually pick one up for cheap at second hand stores.

Good luck!

Susanna

I wanted to say thank you for all those ideas,

I know i have been running out of ideas on what to eat.

paula

sfm Apprentice
Hello all :)

I'm Kelly, and I'm on day three of officially knowing I have a wheat/gluten intolerance. I haven't been tested for celiac however.

I was on an anti-inflammation/elimination diet for over a month, after having near constant stomach problems, low energy, and constant eczema and skin break outs for a few years.

Traditional medicine was no help. I had a colonoscopy, and the GI doc said, "well, we don't see anything abnormal, you must be fine." Grr. That did nothing to explain all the GI issues I was having. Same with dermatologists..."you just need to use the steroid medication and keep your skin moisturized." Grr. But whyy am I having these problems, and how do I fix them?

I went to a naturopath, who put me on the elimination diet. For the first time in a really, really long time, my stomach didn't hurt, my energy was better, and finally finally, my skin started to clear up (after several attempts to go off the medicine, which would make my skin break out).

I started adding things back in, dairy, tomatoes, and I was fine. On my wheat add-in day, I had falafel and a white roll, and wham! Stomach problems back, energy gone, skin completely broke out again. It has taken me till today for things to start calming down.

It also seems that I have a problem with processed sugar. I had a very little bit (about three bites) of ice cream, and had immediate stomach problems. I had a spelt cookie, and I reacted immediately to that, even though I've had spelt pizza crust and been ok. Is this common, to have problems with processed sugar as well? At this point, I am back to avoiding processed sugars (honey, maple syrup are fine).

I'm looking forward to being wheat/gluten free and feeling good. I'm also looking forward to learning from all of you on this journey.

Hi Kelly - Welc ome! I love this site.

First off, spelt is wheat - just a different type, so you should avoid it. Also, ice cream can have wheat, or be cross contaimated if you got it fresh somewhere, where they used the same scoop for another type with, say, cookie dough, or oreos.

It takes awhile to figure out all the places where gluten can pop up. I was using rice milk, since I have a dairy sensitivity, and found out the brand Rice Dream has barley in it (which has gluten)!

I've been gluten free, with mistakes here and there, since November 2006, and it has had a tremendous impact on my health. I'm glad you were able to find out what was causing all of your symptoms!

Hang in there.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

    2. - Scott Adams replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    4. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,208
    • Most Online (within 30 mins)
      7,748

    juliemt
    Newest Member
    juliemt
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • lizzie42
      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.