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

Possible Dairy Problem

Samanthasmomma

Recommended Posts

Samanthasmomma Apprentice
Samanthasmomma
Posted

I am feeling better since going gluten free, but I am still having D. Im thinking of going without dairy for awhile to see if that is a problem as well as gluten. How long do you think it will take to feel better if dairy is a problem? My quess is one to two weeks. Can I use soymilk as a substitute for milk? My last question is what else do I need to watch out for on a dairy free diet? I hope this makes sense...

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted
I am feeling better since going gluten free, but I am still having D. Im thinking of going without dairy for awhile to see if that is a problem as well as gluten. How long do you think it will take to feel better if dairy is a problem? My quess is one to two weeks. Can I use soymilk as a substitute for milk? My last question is what else do I need to watch out for on a dairy free diet? I hope this makes sense...

It does take some time to feel better and I'm glad that you are. If you villi are damaged it is very hard to digest dairy, so that is why it is recommended to at least be dairy light or eliminate it all together.

Some people feel better almost immediately and others like myself it took 2 months for the D to subside in order to leave the house. I have been gluten free for two years and still find it a challenge.

There are always things ready to get you. I have been cooking for an elderly friend and using her pots and pans and have been sick for several days now. Gluten can hide everywhere.

It is hard to tell in the beginning when you will be able to feel better. Your intestines needs to heal. It took some time to do the damage and equally, time to heal.

Soy milk would be a good substitute for milk and look out for "whey" when you are reading labels - it is dairy derived.

Keep it up and one day you will realize that you DO feel good.

Rosewynde Rookie
Rosewynde
Posted

Check labels like crazy for any of the non dairy products. Soy, rice, or almond milks are a good substitute but often have gluten as a part of their processing or are made in a factory that makes other gluten containing products so there is potential for cross contamination.

There are the obvious dairy things to watch for such as, milk, cheese, and butter. You also have to watch out for whey and lactose. There's also another one that can be problems for some that is a milk protein but can't remember the spelling . . . cassien?

sfm Apprentice
sfm
Posted
Check labels like crazy for any of the non dairy products. Soy, rice, or almond milks are a good substitute but often have gluten as a part of their processing or are made in a factory that makes other gluten containing products so there is potential for cross contamination.

There are the obvious dairy things to watch for such as, milk, cheese, and butter. You also have to watch out for whey and lactose. There's also another one that can be problems for some that is a milk protein but can't remember the spelling . . . cassien?

It's casein - a protein in milk. Sometimes you can have a sensitivity to casein, also (I do) - which means that I'll always have a problem with dairy :( (I think I miss that more than the gluten).

Sheryll

sherryGF Newbie
sherryGF
Posted

I definately think that it would be wise to leave off the dairy products for now, until your small intestine heals further. I've been gluten-free for 7 years, and until the past 6 months, had never had any problem with dairy foods! However, testing shows that I have an immune response to casein, so I've had to give up dairy, which is at least as difficult as giving-up gluten! The soy milk wasn't bad at all, but I got sick with it, too, so I'm just trying to deal with it--haven't tried rice milk or hemp milk yet! Good luck!

jlr Apprentice
jlr
Posted

I am so glad that I happened on to this thread - I have been gluten free for 2 years now but I still have bouts of D - I never made the connection that the damaged villi would have problems tolerating other items. I thought if the villi were healed I would back to normal (whatever normal is?).

Is lactose the next thing on the elimination diet for me to get rid of?

I am sorry to hear that others are stilling having D as well - but it is comforting to know I am not the only one.

Thanks,

Janet

TrillumHunter Enthusiast
TrillumHunter
Posted

I gave up dairy as well. I have tested it a couple of times and it is the culprit. I even bought some Lactaid to see if it was lactose. I choose to avoid for now but if I am really wanting ice cream I know I can have it with the Lactaid. So far I've been able to resist. I figure my poor intestines need a break after all those years of damage!

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

Celiac.com Sponsor (A8-M):


somegirl2004 Newbie
somegirl2004
Posted

In order to test for lactorse intolerance, my doctor suggested that I completely get rid of it for three days and then have a giant glass of milk on the fourth day to see if my symptoms (diarrhea and lots of gas) came back.

Too bad I'm from Wisconsin (born and raised with some of the best dairy products around) and haven't yet brought myself to try testing for lactose intolerance! :rolleyes: I made it about 13 hours before someone was shoving cheese down my throat!

Anyway, good luck!

-- Erin

Samanthasmomma Apprentice
Samanthasmomma
Posted
  • Author

Thank you everyone, for your help. I have been dairy free for one week and am feeling better. This too is a learning process and has had quite a few setbacks, but those have just reinforced the need to stay dairy free. I am hoping that someday I will be able to add it back to my diet, but I am gratefull to be feeling a little better right now. I just cant wait untill I feel great again.

HannahHannah Apprentice
HannahHannah
Posted
Thank you everyone, for your help. I have been dairy free for one week and am feeling better. This too is a learning process and has had quite a few setbacks, but those have just reinforced the need to stay dairy free. I am hoping that someday I will be able to add it back to my diet, but I am gratefull to be feeling a little better right now. I just cant wait untill I feel great again.

I love this forum :):):)!! It's so good to have people who know what we're all going through, and aren't embarrassed to talk about the more unsavoury symptoms of being glutened!

Dairy is a problem for me also - nowhere near as much as gluten, e.g. I don't get pain when I eat dairy. I decided to test it out one day and drink a load of milk (about 2 pints) and see what happened! And lo and behold, our old friend D turned up!

Isn't it something to do with the enzyme used to break down dairy (or lactose) is impaired by the damage to the intestines?

Archived

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

Go to topic listing

  • 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. Celiac.com Sponsored Post
      0

      Recently launched Daura Non-Alcoholic Named One of the Best in the World by Forbes

    2. Iam
      - Iam replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Yes. I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy. Numerous dental visits and several professionally made bite plates did very little to help with symptoms
    3. trents
      - trents replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    4. Scott Adams
      0

      New Research Reveals Why the Gut May Stay Sensitive Even After a Gluten-Free Diet

    5. bobadigilatis
      - bobadigilatis replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm. Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,304
    • Most Online (within 30 mins)
      7,748
    Lynette Eve Lord
    Newest Member
    Lynette Eve Lord
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Iam
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Iam · Posted

      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
    • trents
      Feel like I’m starting over

      By trents · Posted

      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    • bobadigilatis
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By bobadigilatis · Posted

      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm.  Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate. Oats, wheat, barley, soy, lentils, peas, chickpeas, rice, and buckwheat, almonds, apples, cherries, apricots, grapes, avocados, spinach, and pistachios.   
    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
×
×
  • 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.