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Newly Diagnosed - Vegan


vfaith

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vfaith Newbie

Hi everyone,

I was recently diagnosed with celiac. I am still eating gluten because I have to get my endoscopy in a couple of weeks but I am trying to get prepared for the transition. I am 27 years old and I have been a type 1 diabetic since the age of 11.

I have been a vegetarian for 13 years and a vegan for 7. I am wondering if anyone has experience with doing the gluten-free, vegan diet? I am scared that I will never be able to eat out anymore.

Thanks!


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celiacgirls Apprentice

I don't have a lot of experience with this but my 8 year old daughter is gluten-free, trialing CF, and is a vegetarian. By eliminating the dairy, she is almost a vegan. I am trying to find other protein sources for her without relying so much on soy because apparently lots of celiacs also have trouble with soy.

When we eat out, she eats a baked potato and a salad. Or beans and rice if they are known to be gluten-free.

We have not tried the vegetarian restaurants here yet but some of them are listed as good places to go for gluten-free dining. My sense is that the vegetarian restaurants may be more accomodating than others.

The sad truth is that with this diagnosis, eating out will probably never be the same. I am also gluten-free and used to love to eat out. While I miss the convenience of being able to eat whatever, I am enjoying the way I feel now and it makes up for the lack of convenience. :)

eKatherine Apprentice
I was recently diagnosed with celiac. I am still eating gluten because I have to get my endoscopy in a couple of weeks but I am trying to get prepared for the transition. I am 27 years old and I have been a type 1 diabetic since the age of 11.

I have been a vegetarian for 13 years and a vegan for 7. I am wondering if anyone has experience with doing the gluten-free, vegan diet? I am scared that I will never be able to eat out anymore.

Why are they telling you you need an endoscopy if they have already given you the celiac diagnosis?

Mango04 Enthusiast
Hi everyone,

I was recently diagnosed with celiac. I am still eating gluten because I have to get my endoscopy in a couple of weeks but I am trying to get prepared for the transition. I am 27 years old and I have been a type 1 diabetic since the age of 11.

I have been a vegetarian for 13 years and a vegan for 7. I am wondering if anyone has experience with doing the gluten-free, vegan diet? I am scared that I will never be able to eat out anymore.

Thanks!

Hi -

I'm not vegan, but vegan restaurants are my favorite. I usually don't have a very hard time getting gluten-free food at vegan restaurants (and I'm soy-free too). There's also an entirely vegan market near me and I love shopping there for gluten-free foods. I especially love raw vegan food.

AndreaB Contributor

Welcome! :D

I was vegan before being diagnosed with allergy and later through enterolab intolerance to gluten and soy. I am also allergic to some beans and my hubby is allergic to pinto and not willing to try others again. Please if you feel you must remain on the vegan diet, don't rely on soy to fill the gap. Soy can cause as much damage to the villi as gluten and it is a cummalative allergen. If you can tolerate any meat at all, please consider buying only the organic or natural meat that hasn't been fed antibiotics or hormones. It is very expensive but worth it for better health. If you don't feel you can go back to eating meat than you will need to rely on beans for your protein with a little soy thrown in. Please be advised that pinto beans are also one of the highest allergenic beans (soy is highest). Also if you don't want to eat meat, maybe you could return to a ovo vegetarian diet and start eating eggs again. Again be picky about what you buy and only buy the cage free, organic eggs. We buy the ones with omega 3 from wild oats. Wild Oats brand and they are also organic.

You will find a wealth of information of this site.

lorka150 Collaborator

i follow a closely related vegan diet (the only non-vegan food i use it honey, and sometimes egg whites in baking and actually find it easier that anything else with eating. because i eat a whole foods diet, i never worry about cross contamination.

regarding eating out, i cannot answer your question as every time i have, i have gotten cross contaminated, however, most vegan restaurants, i am sure, are more diet aware than anywhere else.

BRUMI1968 Collaborator

I have been a vegan eater (except for honey and salmon - I know the salmon is a big one...but other than that I fit the diet well) for two years, vegetarian (except the salmon) for fifteen years.

I did find that when I had to go gluten-free, it was more challenging than if I was a meat/cheese eater. Lots of folks on here would talk about yummy meaty/cheesy things they were eating instead of gluten things...but all I had was veggies, fruits, nuts, etc.

All was fine, actually, until I decided to quit grains and beans altogether, to see if that would help some ongoing problems I was having. Suddenly, I didn't have enough to eat, and especially in the protein department.

I made the choice to TRY eating farm-raised ethically treated chickens and eggs (I visited the farm to check) to see how I felt, both ethically and physically. So far it is going alright, though it's only been a few days.

This diet is totally DOABLE as a vegan - it just requires more diligence. And I would definitely stay away from soy - whatever you use now for protein that has obviously been working for you for some time, should work the same. I guess the combining to get full amino acid profiles might be an issue. Well, beans and corn make a complete protein, so that's one way. Nuts and seeds of course, and quinoa is a full protein. Plus, not all folks need a huge amount of protein. If you've been at this vegan thing as long as you have, you must be doing alright.

Do you ever get the magazine Herbivore. I LOVE that magazine.


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    • trents
      Welcome to the forum, Linda! Many on this forum can sympathize with you. It can be extremely difficult to get reliable information about gluten when it comes to meds, supplements and oral hygiene products. This is especially true since so much of this stuff is generic and comes from over seas. I will deflect with regard to your question about meds and oral products but take you in another direction. Have you tried a low iodine diet. Iodine is known to exacerbate dermatitis herpetiformis and some find that a low iodine diet helps reduce the number of outbreaks. By the way, have you had your celiac antibodies retested recently? If they are elevated that might be a clue that you are getting gluten in your oral hygiene products or meds.
    • Itsabit
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    • trents
      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
    • Cathijean90
      I’ve just learned that I had been diagnosed with celiac and didn’t even know. I found it on paperwork from 15 years ago. No idea how this was missed by every doctor I’ve seen after the fact. I’m sitting here in tears because I have really awful symptoms that have been pushed off for years onto other medical conditions. My teeth are now ruined from vomiting, I have horrible rashes on my hands, I’ve lost a lot of weight, I’m always in pain, I haven’t had a period in about 8-9 months. I’m so scared. I have children and I saw it can cause cancer, infertility, heart and liver problems😭 I’ve been in my room crying for the last 20minutes praying. This going untreated for so long has me feeling like I’m ruined and it’s going to take me away from my babies. I found this site googling and I don’t know really what has me posting this besides wanting to hear from others that went a long time with symptoms but still didn’t know to quit gluten. I’m quitting today, I won’t touch gluten ever again and I’m making an appointment somewhere to get checked for everything that could be damaged. Is this an automatic sentence for cancer and heart/liver damage after all these symptoms and years? Is there still a good chance that quitting gluten and being proactive from here on out that I’ll be okay? That I could still heal myself and possibly have more children? Has anyone had it left untreated for this amount of time and not had cancer, heart, fertility issues or liver problems that couldn’t be fixed? I’m sure I sound insane but my anxiety is through the roof. I don’t wanna die 😭 I don’t want something taking me from my babies. I’d gladly take anyone’s advice or hear your story of how long you had it before being diagnosed and if you’re still okay? 
    • trents
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