Struggling w/ Gluten Challenge

[McNish]

Hi!  I'm not sure what kind of answers I'm looking for - maybe just to talk things out.  I'm seriously struggling with taking the Gluten Challenge for the 2nd time.  Yes, 2nd time. 🤨 I've been gluten-free for a few years due to thyroid issues (not hashimoto).  Anyway, I became extremely sick on vacay this past year....after eating a churro (was in Mexico) and it was the only gluten I had the entire trip. Other issues along they way prompted me to get a genetic test for Celiac - which was positive - DQ8. 

I self imposed the challenge & after 2 weeks I was so miserable -  to the point I was in tears due to the nausea & aching joints.  My PCP said 2 weeks should be plenty of time for a blood test and of course it was negative.  She pretty much dismissed my concerns and said I was just like her - intolerant and discouraged an endoscopy as it was "to costly".  I didn't exactly buy into her reasoning, and scheduled an appt with a GI but now I'm wondering if it's even worth it.  

I've had symptoms off & on my entire life; early years with low iron, anemia, canker sores, & now 40's & 50's early onset osteopenia, elevated liver enzymes, brain fog, swollen joints, just too dang many to list.  And oddly enough, when I eliminate gluten all the symptoms are greatly diminished.  My enzymes return to normal.  No joint pain, bloat, swelling, or nausea.  

Do I really put myself through the misery of the challenge to find out?  I have 2 grown sons that don't seem to have any issues - but. it doesn't mean they won't in the future. (They can easily get genetically tested) 

In looking back at my family history - my Dad had Non Hodgkin's Lymphoma & researchers think that people with celiac disease are at an increased risk of developing some types of cancer, including NHL. This absolutely terrifies me as I lost both parents to cancer. 

After the churro incident I have been strictly gluten-free & no cheating.  I felt too sick to want to cheat.  

At this point what will the challenge accomplish?  My eating habits won't change.  I'm either extremely intolerant or I have Celiac.  The only thing the challenge will do is provide is a definitive answer one way or the other.  Does an official DX outweigh the misery of the challenge.....

 

 

 

 

[trents]

The gluten challenge for an endoscopy/biopsy is much shorter than that for the blood antibody test, 2 weeks vs. 6-8 weeks. Just thought I'd throw that in if you wanted to push for the biopsy.

In some European countries there are real benefits to an official dx of celiac disease. There are stipends to help pay for gluten-free food as well as regular follow-up care for celiac disease manangement. There is nothing like that in the USA, however.

For many people, an official celaic dx has psychological benefits in that it prevents them from rationalizing away their reaction to gluten and helps them stay on track with the gluten free lifestyle.

If you don't need either of the above to stay on track with gluten-free living, then quit torturing yourself and go whole hog in on gluten-free living. With all of your health issues, many or all of which can be associated with either celiac disease or NCGS (Non Celiac Gluten Sensitivity) I believe you are risking more damage to body systems by continuing with the challenge.

[plumbago]

I think by "gluten challenge," you mean you are now eating gluten in preparation for another Celiac panel test (or was it the endoscopy)?

In any case, make sure you get or got the full complement of Celiac serology tests, not just one or two.

For me, it unquestionably has helped to receive an official diagnosis, it has simplified the plan for me, what I need to do - always.

[Wheatwacked]

4 hours ago, McNish said:

This absolutely terrifies me as I lost both parents to cancer. 

1. Get your vitamin D (25-hydroxy vitamin D test) blood plasma up to 80 ng/ml.  Low D is found in virtually every disease state including simply getting old.  The current minimum is only enough to prevent Rickets. But what about the rest of our skeleton and our mental health and our compromised immune system?  
2. Next most important regarding cancer is increasing iodine intake.  Iodine is used by the immune system to kill cells with defective DNA. Not enough, the cells multiply uncontrolled. That's what cancer is, isn't it. Only 80% of iodine is in the thyroid. Most of the rest is found in the breasts.  In the US the population average of iodine intake since 1970 has decreased by 50% and the incidence of of cancer has doubled.  Compared to Japan where their iodine intake starts at 1000 mcg a day (the US RDA is 125mcg and the Safe Tolerable Upper Limit is set a 1125 mcg) and their incidence of breast cancer is half the US.  When they discovered that iodine was a preventative for radiation poisoning it became important to National Security. Coincidently,  UC Berkley dropped a bombshell in 1948, which became known as the Wolff-Chaikoff Effect which effectively ended a thousand years of iodine as a medicine. The Wolff-Chaikoff Effect:  Crying Wolf?
3. Liver enzymes, brain fog, gall bladder type symptoms, look at your intake of Choline.  Remember when they said don't eat eggs, liver, red meat for fear of cholesterol? Yet following those recommendations as a society we are only getting sicker.  Choline is 80% of mitochondria membrane, where ATP energy is made by B vitamins; and is required for acetlycholine synthesis (nerve transmission), It is an important but ignored factor in controlling homocysteine (an independent indicator of cardiovascular inflammation) and an essential ingredient of bile. Less than 10% on the western diet get enough.
4. Supplementing Folic acid, vitamin A and E supplements have been linked to increased Lung and prostate cancer in several controlled trials. One study was stopped midway through because the group taking folate had 17% more cancer than the control group.  See one example below. Best get them from food sources.  I don't know if it is still true but most vitamin E supplement was made from wheat.

Just my opinion but seems like the advent of indoor work (vitamim D) and TV Dinners (processed foods requiring fortification) was the beginning of the end.

Quote

 

benefits of vitamin D

He said he checks each patient’s 25(OH)D level and supplements to reach a target of 80 ng/mL in adults and children. Of the first 1,500 patients McCarthy tested, 40% began with vitamin D levels less than 20 ng/mL and 70% less than 35 ng/mL. Only 1% initially had values within his target range.

According to McCarthy, his target range is based upon several factors:

• A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;
• Data in patients with breast cancer showing a reduction in the incidence of new cancer with postulated 0 point at 80 ng/mL;
• Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;
• More than 200 polymorphisms of the vitamin D receptor requiring higher D levels to attain same desired outcomes;

 

Quote

   Vitamin D Is Not as Toxic as Was Once Thought    Although the Royal Academy of Physicians admitted that it did not have any direct evidence for this conclusion,... As a result, legislation was instituted in Great Britain forbidding the fortification of any food or any product with vitamin D. This concern for vitamin D toxicity in children led to most of the world (including countries in Europe, the Middle East, Asia, Africa, and South America) banning vitamin D fortification of milk.   Ekwaru et al recently reported on more than 17,000 healthy adult volunteers participating in a preventative health program and taking varying doses of vitamin D up to 20,000 IU/d. These patients did not demonstrate any toxicity, and the blood level of 25(OH)D in those taking even 20,000 IU/d was less than 100 ng/mL

 

Quote

     Folic Acid and Risk of Prostate Cancer: Results From a Randomized Clinical Trial     Among the 643 men who were randomly assigned to placebo or supplementation with folic acid, the estimated probability of being diagnosed with prostate cancer over a 10-year period was 9.7%  in the folic acid group and 3.3% in the placebo group.  In contrast, baseline dietary folate intake and plasma folate in nonmultivitamin users were inversely associated with risk of prostate cancer, although these associations did not attain statistical significance in adjusted analyses. 

[Ginger38]

I got misinformed in the beginning of my journey and even with positive TTG-IGA antibodies in my blood I was not sent to gastro for further work up or biopsy, I was just told to go gluten free bc I had intolerance to gluten but no way did I have celiac. Many years later I took myself to the gastro doc , I still have positive antibodies but lower than before and he really wants me to have the biopsy but aside from cost I just do not want to go back to eating all that gluten bc like you I get extremely ill, like to the point I can’t work and sometimes I have palpitations and SVT episodes with gluten consumption. Not to mention the bloating and nausea and fatigue and mental fog and joint pains. And the terrible diarrhea that keeps me in the bathroom. The doc also told me the biopsy is not 100% so even if it’s negative it’s possible I could still have celiac. Either way I can’t eat gluten anymore. So like you I’m lost on what to do bc the doc really acts like it’s a big deal but as of right now I just don’t want to purposely harm myself and make myself sick to “hopefully” get a positive biopsy. The only thing a positive biopsy would do is that he can put celiac in my diagnosis list officially and he can order yearly labs and tests with that diagnosis. I just don’t get why it’s this complicated 🤷🏼‍♀️