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

Celiac newbie

Matt8949
 Share
Go to solution Solved by cristiana,

Recommended Posts

Matt8949 Newbie
Matt8949
Posted

Good evening,

I’ve just been diagnosed with celiac last week at 35 years of age. Quite surprised I have not known before but it makes sense looking back at symptoms. I generally don’t eat pasta/pizza but it’s the enjoyable bits like beer/cake/biscuits that’s hard to manage. 
I’m seeing a lot of ‘may contain’ and ‘made in a factory where wheat and gluten is handled’ etc and I’m wondering how safe do people play this and how people find package reading with new understanding developing all the time. 
 

Matt 

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

Celiac.com Sponsor (A8-M):


RMJ Mentor
RMJ
Posted

Welcome!

People with celiac disease differ greatly in their sensitivity to gluten contamination. I’m super sensitive. I couldn’t get my antibody levels down to the  normal range until almost all gluten free processed foods I ate were certified gluten free. I definitely avoid ”may contain” and am wary of “made in a factory…”.  That last statement isn’t required by law in the US so I may be getting foods made in factories that handle wheat without knowing it. I try not to eat too many processed foods.

Many people aren’t nearly as sensitive.  You may just have to see what works for you.

trents Grand Master
trents
Posted

RMJ pretty much says what there is to say on the subject. It mostly boils down to your level of gluten sensitivity but there are other factors as well. In a production environment that is not dedicated gluten free the level of cross contamination may vary from batch to batch and from run to run. When the goal of production is not to arrive at a gluten free product then there are many variables. How well do they clean the machinery after running a wheat-based product? What is the level of cross contamination of the raw ingredients they are receiving from suppliers?

Another factor is that many celiacs are "silent". That is they do not experience discernable reactions to gluten consumption even though it is doing damage to their small bowel mucosa over time.

So, there is just no way to answer your question in a black and white fashion.

  • Solution
cristiana Veteran
cristiana
Posted
  • Solution

Hi Matt

I am based in the UK and find that that foods with the 'may contain' label more often than not DO contain gluten and I end up with symptoms.  Here in the UK labelling has become incredibly strict, but that has to be a good thing.   

I think in time I am sure you will find gluten-free products you like that you will enjoy, it just takes a bit of time.  I miss McVities Penguins terribly but have recently found some fantastic chocolate biscuits in Tescos which, dare I say it, are probably even better than Penguins!

Cristiana

 

 

Wheatwacked Veteran
Wheatwacked
Posted

Hello Matt,

     You don't say how you were diagnosed, but I assume at your age it was verified by damage to your small intestine found by endoscopic visualization or biopsy.

     That needs to heal.  Afterwards, you can experiment with ‘may contain’ and ‘made in a factory' foods.  

Sabrine Rookie
Sabrine
Posted

Finding this interesting but I’m confused. Just been told my celiac diagnosis today. No idea how long I’ve had it but I do suffer from constipation and I’ve lost a lot of weight in the last few weeks but fortunately no other symptoms. this is going to sound like an ignorant question but do I have to go completely gluten-free immediately or can I do it gradually. Will taking out most of the obvious things like pasta in my diet do any good or do I have to eliminate all gluten to do any good?

RMJ Mentor
RMJ
Posted
1 hour ago, Sabrine said:

Finding this interesting but I’m confused. Just been told my celiac diagnosis today. No idea how long I’ve had it but I do suffer from constipation and I’ve lost a lot of weight in the last few weeks but fortunately no other symptoms. this is going to sound like an ignorant question but do I have to go completely gluten-free immediately or can I do it gradually. Will taking out most of the obvious things like pasta in my diet do any good or do I have to eliminate all gluten to do any good?

You need to go completely gluten free in order to heal your intestines.

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

Ditto with what RMJ said. 

Matt8949 Newbie
Matt8949
Posted
  • Author
8 hours ago, Wheatwacked said:

Hello Matt,

     You don't say how you were diagnosed, but I assume at your age it was verified by damage to your small intestine found by endoscopic visualization or biopsy.

     That needs to heal.  Afterwards, you can experiment with ‘may contain’ and ‘made in a factory' foods.  

I was diagnosed via two blood tests, I have an endoscopy in about 10 days which I am assuming will confirm (or tell me that the Dr gave a misdiagnosis which I hope but is very unlikely). 
 

Thank you all for your answers, I have immediately adopted a gluten free diet, and am very cautious. Hopefully it’s something that I developed recently and the damage to my innards isn’t too bad. 

Sabrine Rookie
Sabrine
Posted

I am hoping for exactly the same as you Matt. Does the endoscopy give any indication of how bad damage is that has been done? I wish I hadn’t ignored the constipation for the two years but I really thought it was caused by other medication I was on. From what I am reading, I am hoping that damage done can be repaired or am I being too optimistic?

 

 

Matt8949 Newbie
Matt8949
Posted
  • Author
41 minutes ago, Sabrine said:

I am hoping for exactly the same as you Matt. Does the endoscopy give any indication of how bad damage is that has been done? I wish I hadn’t ignored the constipation for the two years but I really thought it was caused by other medication I was on. From what I am reading, I am hoping that damage done can be repaired or am I being too optimistic?

 

 

From what I have read the endoscopy will give the clinicians a good level of understanding around the damage if there is any, this will need to heal and there would be a healing process over time where the body would naturally repair as it would a wound, but of course depends on the extent of the damage. 
You can only work with what you know, so many things cause similar symptoms so it’s hard to get on top of early I guess. 

RMJ Mentor
RMJ
Posted
4 hours ago, Matt8949 said:

I was diagnosed via two blood tests, I have an endoscopy in about 10 days which I am assuming will confirm (or tell me that the Dr gave a misdiagnosis which I hope but is very unlikely). 
 

Thank you all for your answers, I have immediately adopted a gluten free diet, and am very cautious. Hopefully it’s something that I developed recently and the damage to my innards isn’t too bad. 

For an accurate diagnosis you should continue to eat gluten until you have the endoscopy. How long have you been gluten free?

Matt8949 Newbie
Matt8949
Posted
  • Author
10 minutes ago, RMJ said:

For an accurate diagnosis you should continue to eat gluten until you have the endoscopy. How long have you been gluten free?

I have avoided gluten since last Monday so a week and a half, another 10 days until my endoscopy so it would be around three weeks if I continue to avoid. 

trents Grand Master
trents
Posted
(edited)

Matt, ditto to what RMJ said about continuing to consume gluten until the endoscopy/biopsy is done. Many have made the mistake of not knowing to do that and there was enough healing of the villous lining of the small bowel to provide results that were not clear. They you are in the dilemma of conflicting test results. Having said that, there are some cases where the individual's health is so fragile that continuing to consume gluten in order to ensure a valid biopsy result is contraindicated. 

Edited by trents
Matt8949 Newbie
Matt8949
Posted
  • Author
24 minutes ago, trents said:

Matt, ditto to what RMJ said about continuing to consume gluten until the endoscopy/biopsy is done. Many have made the mistake of not knowing to do that and there was enough healing of the villous lining of the small bowel to provide results that were not clear. They you are in the dilemma of conflicting test results. Having said that, there are some cases where the individual's health is so fragile that continuing to consume gluten in order to ensure a valid biopsy result is contraindicated. 

Thank you both, that makes sense. I will treat myself over the week and will limit it so that I can give myself the best chance of a conclusive result but not overboard. 

trents Grand Master
trents
Posted
(edited)

Matt, recent guidelines for the "gluten challenge" are 10g of gluten (the equivalent of 4-6 slices of bread) daily for at least 2 weeks. And this would apply to either the antibody blood testing or the endoscopy/biopsy. The term "gluten challenge" refers to those who have been gluten free for a significant period of time but then wish to get tested for confirmation of celiac disease and so need to return to gluten consumption for testing purposes. So, my point is that it may not be appropriate to "limit" your gluten consumption as you go back on it leading up to the endoscopy/biopsy.

Edited by trents
Wheatwacked Veteran
Wheatwacked
Posted

Agreement with trents and RMJ.  In fact you should go hog wild on gluten until the endoscopy.  The more damage the more likely they'll find it.

It does'nt matter positive blood or endoscopy.  Either one positive is not a misdiagnosis.  Some people with Dermetitis Herpetiformis, the dermatologic celiac disease, test negative for both blood and endoscopy.  The hard part is overcoming denial, both personal and from medical staff.  You are making a good start.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
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. sc'Que?
      - sc'Que? commented on Celiac.com Sponsor: Review's article in Product Reviews
      1

      Bold Taste, No Alcohol & Crafted to Remove Gluten: Daura Non-Alc Beer Takes Alcohol-Free Beer to the Next Level

      @Daura Damm: Can we get a gluten-free Imperial Oatmeal Stout, please? Please?!?
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet official, the Health Director of...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    4. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    5. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,547
    • Most Online (within 30 mins)
      7,748
    GSward
    Newest Member
    GSward
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • 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.