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Week 6 of eating gluten


Daisy23
Go to solution Solved by knitty kitty,

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Daisy23 Rookie

I had a colonoscopy and upper scope after having reoccurring c diff for close to two years. Celiac was the last thing on my mind, but the biopsy came back as elevated for something that was suggestive of possible celiac. 
Upon learning this and researching I believe it’s correct based on my symptoms. 
( skin rash, hair loss, lost 25% of my weight rapidly, bloating, rotating different bowel movements) also learned that there’s some studies that point to c diff reoccurring with celiac disease. 

I am eating tons of pizza and bread, but it is white bread. Now this might sound dumb, but is white bread  okay for the gluten challenge?  I can’t eat a piece of full wheat without wanting to cry. All my life I’ve avoided bread and pasta due to constipation and pain right after. I ate pasta 3 years ago and it landed me in the ER thinking my appendix exploded. Turns out, just constipated. Cut pasta out forever after that. 

week 4 constant diarrhea- thought c diff was back. Testing said no.


I am on week 6, and I’ve been constipated  for  one week now. I’m using miralax at this point and hating my life bc it’s so painful. 
does anyone think that maybe I would have a positive blood test after seven weeks instead of the full 8 based on pizza and white bread almost every day?Or should I add in full wheat bread for the remaining 2 weeks and push through for 8 total? 

Any advice?! Please and thank you. 
sorry this was so long.


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  • Solution
knitty kitty Grand Master

@Daisy23, welcome to the forum!

Yes, white bread is fine for the gluten challenge.  A slice of bread can have between 2.5 to 5 grams of gluten.  

You may want to share the following information with your doctors and ask for testing sooner.  

 

According to recent research, updates to the gluten challenge are being implemented.


Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer.

While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.  

Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.  

References:

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

And...

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader

 "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."


Keep us posted on your progress!

Daisy23 Rookie
7 minutes ago, knitty kitty said:

@Daisy23, welcome to the forum!

Yes, white bread is fine for the gluten challenge.  A slice of bread can have between 2.5 to 5 grams of gluten.  

You may want to share the following information with your doctors and ask for testing sooner.  

 

According to recent research, updates to the gluten challenge are being implemented.


Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer.

While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.  

Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.  

References:

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

And...

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader

 "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."


Keep us posted on your progress!

 

Thank you so much for all the info! 
I’ll be sure to pass this info to my GI.  This is all new territory for me. I went in for my procedure assuming damage was done from my past infections and was blindsided with results.
I will update my post when I know more. 
 

thank you again! So very helpful 

trents Grand Master
(edited)
1 hour ago, Daisy23 said:

I had a colonoscopy and upper scope after having reoccurring c diff for close to two years. Celiac was the last thing on my mind, but the biopsy came back as elevated for something that was suggestive of possible celiac. 
Upon learning this and researching I believe it’s correct based on my symptoms. 
( skin rash, hair loss, lost 25% of my weight rapidly, bloating, rotating different bowel movements) also learned that there’s some studies that point to c diff reoccurring with celiac disease. 

I am eating tons of pizza and bread, but it is white bread. Now this might sound dumb, but is white bread  okay for the gluten challenge?  I can’t eat a piece of full wheat without wanting to cry. All my life I’ve avoided bread and pasta due to constipation and pain right after. I ate pasta 3 years ago and it landed me in the ER thinking my appendix exploded. Turns out, just constipated. Cut pasta out forever after that. 

week 4 constant diarrhea- thought c diff was back. Testing said no.


I am on week 6, and I’ve been constipated  for  one week now. I’m using miralax at this point and hating my life bc it’s so painful. 
does anyone think that maybe I would have a positive blood test after seven weeks instead of the full 8 based on pizza and white bread almost every day?Or should I add in full wheat bread for the remaining 2 weeks and push through for 8 total? 

Any advice?! Please and thank you. 
sorry this was so long.

Yes, with the amount of gluten you are eating daily it would not surprise me that your will have positive test results after 7 weeks. The Mayo Clinic time line calls for the daily consumption of  gluten in the amount equivalent to two slices of wheat bread (either whole wheat or white) for 6-8 weeks), though that standard has recently been called into question as maybe not intense enough in the daily amount to give consistently reliable test results. The more gluten consumption daily the better.

Edited by trents
Daisy23 Rookie
9 hours ago, trents said:

Yes, with the amount of gluten you are eating daily it would not surprise me that your will have positive test results after 7 weeks. The Mayo Clinic time line calls for the daily consumption of  gluten in the amount equivalent to two slices of wheat bread (either whole wheat or white) for 6-8 weeks), though that standard has recently been called into question as maybe not intense enough in the daily amount to give consistently reliable test results. The more gluten consumption daily the better.

Thank you!

Totally ready for the challenge to be over with. I think after learning how much is in just one slice I’m likely to test positive. I’m basically all gluten right now. I wanted to be sure I wasn’t causing any weak positives and went all out. I’m feeling the aftermath, though. 

Ginger38 Rising Star
12 hours ago, knitty kitty said:

@Daisy23, welcome to the forum!

Yes, white bread is fine for the gluten challenge.  A slice of bread can have between 2.5 to 5 grams of gluten.  

You may want to share the following information with your doctors and ask for testing sooner.  

 

According to recent research, updates to the gluten challenge are being implemented.


Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer.

While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.  

Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.  

References:

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

And...

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader

 "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."


Keep us posted on your progress!

That’s interesting to know only 3 grams of gluten will initiate an immune response . How do you know how many grams of gluten is in a food? 

  • 3 weeks later...
Daisy23 Rookie

I tested negative, extremely negative not  one antibody found and I’m not IGA deficient.
Giving up gluten has def regulated my bowel movements.

I might be back at square one with everything else tho. :( 


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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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