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

Back To Eating Wheat

whitelacegal

Recommended Posts

whitelacegal Contributor
whitelacegal
Posted

Does anyone know if you are diganosed with celiac and went back to eating wheat wouldnt you start having problems again with diarrhea? I went back to eating wheat because i had 2 different doctors and 1 said yes i have this and 1 said no, have been eating wheat for 3 months and no diarrhea but have problems with sores in mouth?

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

Celiac.com Sponsor (A8-M):


KaitiUSA Enthusiast
KaitiUSA
Posted

If a doctor told you that you had it then I would say you have it. Doctors don't just diagnose celiac. Alot of doctors don't know what they should either so I think I would believe the one that said you have it.

You don't have to have symptoms with celiac and they do not necessarily have to come back. The point is the damage that it is doing will eventually catch up with you whether you feel the symptoms or not.

What tests did you have done that caused the doctor to diagnose you with celiac?

whitelacegal Contributor
whitelacegal
Posted
  • Author

kaitiUSA,

I had the endoscopy and colonscopy done and the biopsy on one of these tests came back Celiac disease, i cant recall which test said postive. After the doc retired that said i had celiac disease i went to a new doc, he gave me blood tests and these came back negative for Celiac so the new doc told me that i dont have it! I have been eating what i want since March but dont have diarrhea like i did when i was diagnosed, but i continue to have sores in the mouth.

KaitiUSA Enthusiast
KaitiUSA
Posted

If you had a endoscopy done and that was positive then you have celiac. Even if you had symptoms before and don't now that does not matter. Symptoms or not and when they appear or don't appear does not tell anything about celiac. You still are getting damage. I think that this doctor may not know as much about celiac...you were diagnosed because they found damage caused from gluten in your intestines. That doesn't change with time...gluten will always do that to a celiac.

Were you ever gluten-free at a point? That can interfere with results of tests. You could have been IgA defiecient and that could have cause blood results to come back negative when they otherwise would be positive.

key Contributor
key
Posted

I have to agree with Kaiti. It sounds like you have celiac if the biopsy was positive. The blood tests were probably negative because you weren't eating wheat at the time maybe, but it is still doing damage.

If I were you I would maybe even contact the place you were first diagnosed to see what your medical history says and what tests were done. Then I would also read alot of research on celiac on the computer so you can be aware of the disease. I have heard mouth sores are a symptom. Maybe someone else can be more help in that department.

Good luck,

Monica

tyki Newbie
tyki
Posted

My uncle does not specifically get mouth sores, nor does he get diarhea. However, within 8 hours of eating wheat, rye or barley, his face and arms break out in a rash of blisters.

Diarrhea and stomach pain are not the only signs of celiac. The mouth sores you have could well be the dermatitis symptom.

If the new blood tests were for the antibodies, you very well could have tested negative, because your time being gluten-free had allowed your body to heal.

I had the blood test done last fall, and my test came back negative, it would be real easy to tell myself see the test was negative I don't have Celiac. But the truth of the matter is, the intestinal problems I was having before the test had diminished significantly in the months just before the test, when my gluten intake had been diminished. And the week before the blood test, I ate gluten at every meal to test the theory, and by the time I went in for the blood work, I couldn't sit in the waiting room for more than 15 minutes without a trip to the bathroom.

When I showed the family doc the info about Celiac, he agreed to run the blood test, but he told me before I left the office, "The food challenge has already given you the answer. Your body cannot tolerate gluten, and it thrives when you eliminate gluten." So, I don't have a 100% iron clad diagnosis of Celiac, but I know my family history, grandmother couldn't eat wheat, uncle has Celiac, Dad has faced the fact that he has it to some degree, and we suspect many others in the family have it but won't admit it. I have a 1 in 20 chance of having the Celiac genes....and I have the symptoms. I have Celiac, I just don't have to pay $300 for a DNA test for it.

tyki

I'm in a special club in my family

I have Celiac

what a heritage.

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. Lotte18
      - Lotte18 commented on Scott Adams's article in Diagnosis, Testing & Treatment
      9

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

      I feel the same way. Looks like the research is being done in Switzerland. Thank you Scott for keeping us updated on the research!
    2. knitty kitty
      - knitty kitty replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease. It will not show if you have active Celiac disease. Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies. The...
    3. trents
      - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases...
    4. McKinleyWY
      - McKinleyWY posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast. All my life I have avoided bread and most products containing enriched flour as they contain yeast (when making the man made vitamins to add back in to the flour). Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat...
    5. trents
      - trents replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,239
    • Most Online (within 30 mins)
      7,748
    Y. Chan
    Newest Member
    Y. Chan
    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

    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      A little about me and my celiac disease

      By trents · Posted

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Gluten Free Coffee

      By Peace lily · Posted

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
×
×
  • 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.