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

Need Opinions, Please!


DarkStar

Recommended Posts

DarkStar Newbie

Hello all!

I am new on here, so let me introduce myself first.

My name is Valerie and my boyfriend just recently got diagnosed with celiac disease.

Basically his story goes like this:

During college he was having stomach problems, so he went to the doctor to find out what it was.

They told him it was acid reflux, and they had to do a blood test to test for Celiacs. Somehow, the test did not come out correctly, and he was tested negative for celiacs.

So he continued to live a normal life, or in other words, eat an everyday diet. (And of course in college, boys love to drink beer..)

His stomach started hurting again a few months ago, really badly, to the point where he couldn't move (at this time he is 25). He went to many doctors, and took the same tests again, and was tested positive for Celiacs.

It has now been probably 6 months ( I can't really remember for sure) that he has been on a gluten-free diet. He has been really good about his diet, and buys mostly Udi's brand food, and shops at natural food stores.

However, even though he has been strict about his diet, and I also make sure he does good with his diet as well, he still gets stomach aches.

It was like before he was diagnosed, just not as severe. We just have a hard time trying to figure out what it could be if he has not eaten any gluten in months.

He is however, taking pills for Acid Reflux, because the doctor says he has this too.

So I thought could it be:

the pills?

another allergy?

ulcers?

another stomach condition?

I would just like to know if anyone else still gets stomach aches, even when on a strict gluten free diet.

Any, advise, or input would be greatly appreciated. :)

Thanks, all.


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

If he has celiac disease he may not be able to tolerate lactose (the milk sugar in milk, cream, ice cream - sometimes not even in cheese, yogurt, sour cream etc.). Have him eliminate these things and see if it helps. Once he heals he should no longer get acid reflux and no longer need the pills.

Also, make sure he has gotten rid of all trace glutens, like in personal care products, prescription and OTC medications, supplements. Check the labels especiallly of all sauces, marinades, salad dressings, avoid soy sauce unless it is Tamari or La Choy. Throw away any old wood utensils and cutting boards, any plastic things that are scratched, any scratched nonstick pans, get a new toaster and colander (which cannot be cleaned), run any cast iron through the cleaning cycle of the oven and reseason.

ETA: Sorry, forgot my manners. Welcome!!

DarkStar Newbie

If he has celiac disease he may not be able to tolerate lactose (the milk sugar in milk, cream, ice cream - sometimes not even in cheese, yogurt, sour cream etc.). Have him eliminate these things and see if it helps. Once he heals he should no longer get acid reflux and no longer need the pills.

Also, make sure he has gotten rid of all trace glutens, like in personal care products, prescription and OTC medications, supplements. Check the labels especiallly of all sauces, marinades, salad dressings, avoid soy sauce unless it is Tamari or La Choy. Throw away any old wood utensils and cutting boards, any plastic things that are scratched, any scratched nonstick pans, get a new toaster and colander (which cannot be cleaned), run any cast iron through the cleaning cycle of the oven and reseason.

ETA: Sorry, forgot my manners. Welcome!!

Thanks!

That sounds like good advice.

I will tell him about the lactose intolerance. He is Italian, so that might be difficult for him to give up (even more so, since pasta is gone)

But I will let him know.

And do you really think that his acid reflux will be totally gone, once he heals?

Also, what kind of care products do you think have gluten? Like shampoos, body washes, toothpaste, etc?

kareng Grand Master

Thanks!

That sounds like good advice.

I will tell him about the lactose intolerance. He is Italian, so that might be difficult for him to give up (even more so, since pasta is gone)

But I will let him know.

And do you really think that his acid reflux will be totally gone, once he heals?

Also, what kind of care products do you think have gluten? Like shampoos, body washes, toothpaste, etc?

All the main brand toothpastes seem to be fine. Look on the product topic or use the google search in the upper right corner.

Roda Rising Star

You said he is eating a lot of Udi's products. Is he eating the granola? Appx. 10-15% of celiacs can not tolerate even certified gluten free oats. If this is the case I would get rid of the granola or any gluten free oat products. Bob's Red Mills can have oat cc (I know I react bad). Just another thing to mention.

mushroom Proficient

I will tell him about the lactose intolerance. He is Italian, so that might be difficult for him to give up (even more so, since pasta is gone)

Once he has forgotten what real Italian pasta tastes like, he can still have gluten free pasta :D . He might try Tinkyada, or there are other brands that others like that are not available to me here whose names I cannot remember now.

Skylark Collaborator

For the first year when I figured out I was celiac I also got stomach aches from soy and dairy. After about a year and a half I was able to eat them again. He might try eliminating those two foods for a couple weeks and see if it helps. I know it's hard, but it beats stomach aches!


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



Celiac.com Sponsor (A8-M):



DarkStar Newbie

Thank you all for the replies.

I think giving up diary products for a few weeks is a good idea, to figure out if that is what is causing the stomach aches.

And thanks, Mushroom, for the pasta advice, haha. He has tried some gluten free pastas, he thinks they are ok, but he's still trying to forget what real pasta tastes like :P

Oh and Rods, he doesn't really like granola, so he's ok with that. Most of the Udi's food he has are bread products, and rice cereals.

Anyways, this is kind of a random question, but does anyone know a good cookbook for Celiacs?

Or even a good website for recipes :)

kareng Grand Master

Thank you all for the replies.

I think giving up diary products for a few weeks is a good idea, to figure out if that is what is causing the stomach aches.

And thanks, Mushroom, for the pasta advice, haha. He has tried some gluten free pastas, he thinks they are ok, but he's still trying to forget what real pasta tastes like :P

Oh and Rods, he doesn't really like granola, so he's ok with that. Most of the Udi's food he has are bread products, and rice cereals.

Anyways, this is kind of a random question, but does anyone know a good cookbook for Celiacs?

Or even a good website for recipes :)

We have a cooking/recipe section that has lots of recipes.

love2travel Mentor

Once he has forgotten what real Italian pasta tastes like, he can still have gluten free pasta :D . He might try Tinkyada, or there are other brands that others like that are not available to me here whose names I cannot remember now.

I will never, ever forget what real Italian pasta tastes like! I used to make it often. :( Am making my own gluten-free pasta - haven't happened upon the perfect ingredient ratio yet but am working on it. It'll come...

GlutenFreeManna Rising Star

Are you still eating gluten? Be sure that if you eat gluten that you brush your teeth before kissing him. Also wash your hands AFTER you eat something with gluten like a sandwich. If you are eating gluten it is very easy for you to accidently cross contaminate him by holding his hand or touching his food, etc.

Skylark Collaborator

Here are my favorite cooking blogs

Gluten-free crockpot recipes

Open Original Shared Link

Gluten-free Bay

Open Original Shared Link

Hey, that tastes good!

Open Original Shared Link

Kill.the.gluten

Open Original Shared Link

Tartelette - French Pastry with regular and gluten-free versions

Open Original Shared Link

Straight Into Bed Cakefree and Dried

Open Original Shared Link

DarkStar Newbie

Here are my favorite cooking blogs

Gluten-free crockpot recipes

Open Original Shared Link

Gluten-free Bay

Open Original Shared Link

Hey, that tastes good!

Open Original Shared Link

Kill.the.gluten

Open Original Shared Link

Tartelette - French Pastry with regular and gluten-free versions

Open Original Shared Link

Straight Into Bed Cakefree and Dried

Open Original Shared Link

Wow! Thanks Skylark! That's a lot of links. I'm definitely going to bookmark all of these.

I also went out to Borders yesterday and got a huge gluten-free cook book, "1,000 Gluten-free recipes."

There are some really tasty recipes in this book.

Skylark Collaborator

I've been collecting links for a while. I'm happy to share. :)

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. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

    2. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

    3. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

    4. - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

    5. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

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

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    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

    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • 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.