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

Gluten Isn't The Culprit


ElenaDragon

Recommended Posts

ElenaDragon Explorer

The results from my celiac panel blood test came back negative, but I decided to try the gluten free diet anyway. I went completely gluten free for 2 months, and I did feel better. However, at the end of those two months (a week ago), I started eating gluten again to test whether or not it was the lack of gluten that was helping me. I have been eating cream of wheat, wheat crackers, whole wheat english muffins, and french bread... at least 2 items per day.

For the first two days I felt fine, no changes. Then I ate a small sub sandwich with only turkey, lettuce, tomato, onion, and a little vinegar, followed by a slice of boysenberry pie a little later. A short while after eating the pie, the gas symptoms began (gurgling in my intestines, and later gas and mucus instead of stool coming out). I don't think it was the gluten that started this... is there usually dairy in fresh bread or in pie crusts? I have been dairy free for many months, but I wonder if maybe I was being more diligent about it when I was avoiding gluten as well (since I had to read all the labels anyway). I am also mostly off of soy and haven't had any in the past week. I had some symptoms that day and the next, and then for the past few days I've been fine again (still eating wheat). So it seems that gluten is not giving me problems.

I know before I started the gluten free diet, I would react after eating foods that did not have dairy in them. Maybe my intestines were just irritated in general? Also, just before starting the gluten free diet I also started taking some probiotics. I suspect that they may have something to do with feeling better.

One thing I would like to do is test whether it is the lactose or casein that may be causing me problems. I have been avoiding both. From what I understand, hard cheeses like cheddar have little or no lactose in them? Also, yogurt is generally easier to digest than some other dairy sources like milk? Can anyone suggest a plan for testing lactose/casein intolerance?


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



Celiac.com Sponsor (A8-M):



hathor Contributor

Well, you can have some lactose-free milk or regular milk and a Lactaid pill. If you have problems, it is probably from casein. If you are fine, then try regular milk by itself. A reaction would then mean it is the lactose.

Yes, a lot of bread does have some dairy in it. Pie crust often has butter.

If you have only had problems following this one meal, definitely investigate further. You could have had a touch of a 24 hour stomach bug or food poisoning and not be intolerant to anything. Indeed, it could have been that the probiotics cured whatever was wrong with you before.

No way of telling anything for sure without additional data. Sorry to say you are the experimental subject :o

gfpaperdoll Rookie

Have fun & enjoy your gluten while you can. Please keep us posted periodically on how you are doing!!!!!

bethb Newbie

After I went gluten-free, I started keeping a food journal. I noticed that I would have intestinal symptoms after eating dairy, so I cut it down, but not out. I determined I must be lactose-intolerant and since I LOVE cheese I got some lactase enzyme (the lactase) that breaks down lactose. Taking those seemed to help but not solve my reactions...

I just got my IgG food allergy tests back and it said I was allergic to casein and eggs. So that explains why the lactase pills weren't totally working.

Unfortunately, even soy cheese and almond/nut-based cheeses seem to all have casein. Does anyone know of a "cheese" that doesn't have casein?

Dairy (casein, lactose, etc) can show up in food products, under other names, such as whey. So be sure to read the labels if you want to do the food trial and errors. Now that I'm shopping casein-free, I'm surprised at some of the products that have casein (some marinara sauces, for example).

Good Luck!

ElenaDragon Explorer

Well I'm still doing okay on gluten. However, I'm also still having reactions to something, and dairy is my top suspect. On Friday I ate a few small pieces of milk chocolate, and had the same gas reactions a few hours later (it feels like extra gas is getting produced in my intestines, which causes mucus to be produced as well, probably as a protective measure). But on Sunday night I had three slices of cheese pizza and only had a small reaction, which could have been from all the fat. So maybe it is lactose after all. I think I'm going to skip the lactose/whey/casein for a week or so, and then try some cheese again. If that goes well, I'll move on from there.

Oh, and I did find a soy cheese at Whole Foods which doesn't have casein. I think it's called Vegan Gourmet? I haven't tried it yet since I'm still wary of soy.

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. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    2. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

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

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748

    Beccad611
    Newest Member
    Beccad611
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • 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.