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Just Diagnosed

yuyiconstanza

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yuyiconstanza Newbie
yuyiconstanza
Posted

Hi Everybody!

My boyfriend, after years of suffering, just has been diagnosed as Celiac. We have been learning as much as we can in the last 2 weeks, but even that we have been very careful in what he eats, he still experience problems 50% of the times that he eats.

Is that normal?

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Lisa Mentor
Lisa
Posted
Hi Everybody!

My boyfriend, after years of suffering, just has been diagnosed as Celiac. We have been learning as much as we can in the last 2 weeks, but even that we have been very careful in what he eats, he still experience problems 50% of the times that he eats.

Is that normal?

Welcome to the Board!

Yes, it is very normal. Gluten free two week is a relative little time to heal. It has taken yeas to conclude that your boyfriend has Celiac and it will take some time to heal. Some people see a difference in a few weeks and others will take several months to see a difference in their health. It can take up to years for some with severe damage.

Make sure that he has a dedicated toaster, colander, and wooded spoons and scratch teflon get lost. Gluten can hide everywhere.

Lotions, toothpaste, shampoos and shaving creams could use a double check for gluten ingredients.

Let us know if we can be of help. We are a very interesting group. B)

GFhopeful Rookie
GFhopeful
Posted

It takes a while to get better for some- definitely me. I had to cut back to really basic food - not just gluten-free but also dairy free and really just fruit, veggies, chicken, and rice for a while until I started felling better. Also, there are foods that should be ok for gluten-free (corn tortillas, corn chips,etc) that could be contaminated with wheat flour where they are made so not really safe for us. Just eliminiating pre-packaged food and making food myself for a while, and like i said the very basics, was what helped me feel better more often than not. I did feel improvements right away but am 2+ months in and still not all better, it's a slow healing process for some but I know I'm on the right track when I think back to how sick I was. Good luck to you guys - be vigilant. Keep reading this board and other resources for more info and you'll get there.

stitchy woman Rookie
stitchy woman
Posted

After years of suffering all sorts of things, I just last week got diagnosed with some level of gluten intolerance. So far, I am feeling better and some of the more disgusting symptoms have let up, but I now realize that i am probably still ingesting small amounts of gluten every day. So I'm chalking it up to learning, or ramping up toward going totally gluten-free. I have read a couple of books, but after browsing here realize that I have so much more to learn and do. I guess in the beginning, as we are learning, we will make mistakes, but will make better choices further along the way.

I was looking at a corn muffin last night at supper, and thinking that it looked pretty yummy for being poison! I do have a long way to go, and am glad to have found this forum.

Susanna Newbie
Susanna
Posted

Hey--yes--it can take months for the small bowel to heal, depending on how damaged it was at the time the person went gluten free--it took me about 3-4 mos. to feel closer to normal. Here are my newbie tips:

gluten-free newbie tips--now you can eat to treat, and soon feel better. Here are some key coping strategies to get you started.

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, BUT IT IS NOT EASY OR COMFORTABLE. People around you will eat treats you can't have and you will feel sad and isolated (we all have very emotional connections to food). 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. The good news is, THIS GETS MUCH BETTER OVER THE NEXT SEVERAL MONTHS AS YOU GET USED 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

Guest j_mommy
Guest j_mommy
Posted

WElcome!!!!!!

Take this list withyou when you go shopping...

https://www.celiac.com/st_prod.html?p_prodi...-49107209060.88

That way you won't panic in the store over ingredients...people look at you funny in the store when you do that! :blink:

I craved bread when I first went gluten-free and thought all the premade store bought taste like cardboard!!! I would try whole food bakehouse breads(like homemade) and silly yak bakery....www.sillyyakbakery.com

Good Luck and welcome again!

barbara123 Apprentice
barbara123
Posted
It takes a while to get better for some- definitely me. I had to cut back to really basic food - not just gluten-free but also dairy free and really just fruit, veggies, chicken, and rice for a while until I started felling better. Also, there are foods that should be ok for gluten-free (corn tortillas, corn chips,etc) that could be contaminated with wheat flour where they are made so not really safe for us. Just eliminiating pre-packaged food and making food myself for a while, and like i said the very basics, was what helped me feel better more often than not. I did feel improvements right away but am 2+ months in and still not all better, it's a slow healing process for some but I know I'm on the right track when I think back to how sick I was. Good luck to you guys - be vigilant. Keep reading this board and other resources for more info and you'll get there.

Also dont forget can openers they were a biggie for me until someone wonderful on this site had me check and I think that is what was causing CC issues BARB

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Guest lorlyn
Guest lorlyn
Posted

Just wanted to say hi and welcome to the board. My husband and 10 year old daughter have Celiac. We have been glluten free for about 8 months. All the advice that other people have given you will help. There were a couple of things I had to learn was that we grill out alot and charcoal can have wheat in it. What kind of work does your husband do? Some sheet rock mud has wheat in it. Watch out for medicines and vitiamins. Good luck and keep reading here. You will learn here much faster than trying to do all the research yourself. Every one is very helpful :)

Darn210 Enthusiast
Darn210
Posted

And you will mess up and make mistakes . . .

When you are looking up gluten free items on the internet, double check names/varieties . . . that was one of my mistakes . . . one type of BBQ chip was OK, another with a slightly different name made by the same company was not.

One of my other mistakes . . . outdated information. I was using info from 2005. Apparently :rolleyes: the recipe changed.

Good Luck - you'll be surprised how fast you get the hang of it.

Luisa2552 Apprentice
Luisa2552
Posted

I am just about 1 month in from my diagnosis and I was still having some problems when I tried cutting out dairy. It has worked. I haven't been tested or anything for casein/dairy intolerance but I have read that many with celiac disease do not a handle dairy well, especially before you've had a chance to fully heal. So for now I am dairy/gluten free and doing better.

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    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

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Do talk to your doctor and dietician about checking for nutritional deficiencies.  Most blood tests for the eight B vitamins do not reflect how much is available or stored inside cells.  Blood tests reflect how much is circulating in the blood stream, the transportation system.  Blood levels can be "normal" while a deficiency exists inside cells where the vitamins are actually used.  The best way to see if you're low in B vitamins is to take a B Complex, and additional Thiamine and look for improvement.   Most vitamin supplements contain Thiamine Mononitrate, which is not easily absorbed nor utilized by the body.  Only thirty percent of thiamine mononitrate listed on the label is absorbed, less is actually utilized.  This is because thiamine mononitrate is shelf stable, it won't breakdown sitting on a shelf in the grocery store.  It's so hard to breakdown, our bodies don't absorb it and can't turn it into a form the body can use.  Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) which the body can utilize much better.  (Ask for an Erythrocyte Transketolace Activity test for Thiamine level.  Though not accurate, this test does better picking up on a thiamine deficiency than a blood test.) 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    • trents
      Outgrow celiac?

      By trents · Posted

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    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

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    • Riley.
      Outgrow celiac?

      By Riley. · Posted

      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
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