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Gluten Challenge


flowerpen

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flowerpen Newbie

I have been gluten free for approximately 12 years. It was by accident after jumping on the whole Paleo craze and realizing I felt so much better without grains in my diet. I've since loosened my diet, but gluten containing foods have always caused me issues, so I have kept them out. It's important to note that I do not worry about cross contamination and have cheat meals a few times a year. 

I have been experiencing ongoing gastro issues. I've been through every test imaginable, including scopes and two colonoscopies over the last three years. Xifaxian for SIBO has solved several issues, but I'm still not 100%.

That is why I am doing a gluten challenge. I am one week into a six week challenge for a blood test. I have fallen down a google rabbit hole, however, that has me thinking since I have been gluten-free so long, this whole thing is basically pointless because the blood test will probably come out negative no matter how much I eat. Previous celiac test have shown negative with my levels really low. That makes sense since I have been mostly gluten-free.

I feel awful and feel like I am looking for any excuse to quit. So my question is has anyone been gluten-free for a long period of time and tested positive on a blood test after a 6-8 week challenge?

 


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trents Grand Master
6 minutes ago, flowerpen said:

I have been gluten free for approximately 12 years. It was by accident after jumping on the whole Paleo craze and realizing I felt so much better without grains in my diet. I've since loosened my diet, but gluten containing foods have always caused me issues, so I have kept them out. It's important to note that I do not worry about cross contamination and have cheat meals a few times a year. 

I have been experiencing ongoing gastro issues. I've been through every test imaginable, including scopes and two colonoscopies over the last three years. Xifaxian for SIBO has solved several issues, but I'm still not 100%.

That is why I am doing a gluten challenge. I am one week into a six week challenge for a blood test. I have fallen down a google rabbit hole, however, that has me thinking since I have been gluten-free so long, this whole thing is basically pointless because the blood test will probably come out negative no matter how much I eat. Previous celiac test have shown negative with my levels really low. That makes sense since I have been mostly gluten-free.

I feel awful and feel like I am looking for any excuse to quit. So my question is has anyone been gluten-free for a long period of time and tested positive on a blood test after a 6-8 week challenge?

 

The length of your challenge is appropriate but you also need to be eating a sufficient amount of gluten daily during that time to expect a valid test result. 10 gm daily or about 3 slices of wheat bread or more.

flowerpen Newbie
Just now, trents said:

The length of your challenge is appropriate but you also need to be eating a sufficient amount of gluten daily during that time to expect a valid test result. 10 gm daily or about 3 slices of wheat bread or more.

I have the amount covered. I'm so scared it's not going to be accurate I'm eating gluten for every meal and even choking more down between meals just to make sure I'm good and messed up by the time I go in for the blood test. 

I used to get rashes that I'm now convinced were dermatitis herpetiformis. I'm also hoping that pops up again so I can get it biopsied before the end of the challenge. 

Scott Adams Grand Master

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

  • Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
  • Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

flowerpen Newbie
3 hours ago, Scott Adams said:

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

Thanks. 

What's got me worried is a few studies I've read that show only about 50% of adult celiacs who have been following a long-term gluten-free diet will have enough of a response to show positive on a blood test after 6-8 weeks. 

Wheatwacked Veteran
(edited)
On 2/17/2024 at 11:28 PM, flowerpen said:

I have been experiencing ongoing gastro issues. I've been through every test imaginable, including scopes and two colonoscopies over the last three years.

I think you already know the answer to the question of you and gluten.  For your ongoing issues look for vitamin and mineral deficiencies in your diet.  Unfortunately doctors don't look for nutritional causes of our symptoms.

Top 3 that match your story:  

Have they tested your homocysteine level?  It should be less than 19.  Higher homocysteine can indicate a deficiency in choline, folate, B12 and/or B6. Are you eating or supplementing enough eggs, beef or liver for choline intake?  Taking phosphatidyl choline or eating 4 eggs a day resolved my persistant gut issues.  I went through a lot of Alka Selzer until I started taking Phosphatidyl Choline as pills.  Low choline can cause disruption of bile flow needed to digest fats. Often leading to a misdiagnosis of Gall Bladder Disease.  Difficiency can cause Non Alcoholic Fatty Liver Disease. Less than 10% of us get enough because we are advised to avoid eggs, liver and beef.  The GFD diet does not supplement Folic Acid so giving up gluten can cause the need for more choline.

“Low bile salt production can lead to bile sludge, which significantly lowers the rate of bile flow into the small intestines,” explains Dr. Berg. “This can result in digestive issues, the formation of gallstones, and may lead to gallbladder inflammation.” What Causes Sludge in Gallbladder?

Not enough Thiamine can cause subclinical Beri Beri.

"Gastrointestinal symptoms, such as anorexia, nausea, vomiting and abdominal pain, are very common in patients with Wernicke’s encephalopathy (WE). Mild thiamine deficiency may have only gastrointestinal symptoms."  Gastrointestinal beriberi: a forme fruste of Wernicke’s encephalopathy?   The simplest test is to take 500 mg Thiamine a day or more.  There is no upper limit.  Positive results can come as quickly as in hours.

What is your omega 6:3 ratio?  The typical American is greater than 14:1.  Omega 6 is inflammatory, while omega 3 is healing.  Optimum is less than 3:1.   Omega-3 and Omega-6 Fatty Acids in Vegetables:

Fermented dill pickles (NO vinegar) can help repopulate your gut with lactobacillus which excretes in return for room and board in you gut lactase.  We don't make enough lactase ourselves so many today are suffering from Lactose Intolerance.  The only two brands I know of are Batampte and Bubsies.  The rest are Quick Pickled with vinegar.  You get the taste but not the nutrition.

 

Edited by Wheatwacked
flowerpen Newbie
3 hours ago, Wheatwacked said:

I think you already know the answer to the question of you and gluten.  For your ongoing issues look for vitamin and mineral deficiencies in your diet.  Unfortunately doctors don't look for nutritional causes of our symptoms.

Top 3 that match your story:  

Have they tested your homocysteine level?  It should be less than 19.  Higher homocysteine can indicate a deficiency in choline, folate, B12 and/or B6. Are you eating or supplementing enough eggs, beef or liver for choline intake?  Taking phosphatidyl choline or eating 4 eggs a day resolved my persistant gut issues.  I went through a lot of Alka Selzer until I started taking Phosphatidyl Choline as pills.  Low choline can cause disruption of bile flow needed to digest fats. Often leading to a misdiagnosis of Gall Bladder Disease.  Difficiency can cause Non Alcoholic Fatty Liver Disease. Less than 10% of us get enough because we are advised to avoid eggs, liver and beef.  The GFD diet does not supplement Folic Acid so giving up gluten can cause the need for more choline.

“Low bile salt production can lead to bile sludge, which significantly lowers the rate of bile flow into the small intestines,” explains Dr. Berg. “This can result in digestive issues, the formation of gallstones, and may lead to gallbladder inflammation.” What Causes Sludge in Gallbladder?

Not enough Thiamine can cause subclinical Beri Beri.

"Gastrointestinal symptoms, such as anorexia, nausea, vomiting and abdominal pain, are very common in patients with Wernicke’s encephalopathy (WE). Mild thiamine deficiency may have only gastrointestinal symptoms."  Gastrointestinal beriberi: a forme fruste of Wernicke’s encephalopathy?   The simplest test is to take 500 mg Thiamine a day or more.  There is no upper limit.  Positive results can come as quickly as in hours.

What is your omega 6:3 ratio?  The typical American is greater than 14:1.  Omega 6 is inflammatory, while omega 3 is healing.  Optimum is less than 3:1.   Omega-3 and Omega-6 Fatty Acids in Vegetables:

Fermented dill pickles (NO vinegar) can help repopulate your gut with lactobacillus which excretes in return for room and board in you gut lactase.  We don't make enough lactase ourselves so many today are suffering from Lactose Intolerance.  The only two brands I know of are Batampte and Bubsies.  The rest are Quick Pickled with vinegar.  You get the taste but not the nutrition.

 

Thanks. I was tested for deficiencies and the only thing I was low in at the time was Vit. D and I have been taking supplements for that since. For a small while, I was low in iron as well, but that was also supplemented and is now okay. 

My GI was very thorough and tested me for things that were even just remote possibilities. I have a family history of colon cancer, IBD, and various autoimmune issues, so we didn't want to miss anything. He could not test me for celiac due to my diet, though he did run the panel once just to see what the levels were. I was mid-normal (9 where the normal cutoff was 20). 

I ended up diagnosed with IBS because nothing else could be found at the time.  


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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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