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Gluten Challenge

antares4141

Senior Member
Messages
576
Location
Truth or consequences, nm
Been eating bread, pizza, lasagna, raisin bran for the last 10 days. Better than sex! Not that I would know.

Been a serious gluten avoider since 2011. Virtually none of the symptoms I had before I quit have come back.

Stomach bloat, neuropathy in arms, heavy salivation, feeling like I have been poisoned, death naps after meals, overly sensitive
esophagus, air hunger, pain under right rib, blisters on inside of lips,
Generally Lower blood pressure, high heart rate,
proctola flugex, hard to describe swelling in throat.

Still have fatigue, pem, brain burn, brain fog, mold, chemical sensitivity, weird myalgia like headaches, soars in roof of mouth and gums, pain that travels around my head almost like sciatica does to lower limbs. sleep disorder, and probably some other symptoms. There is some overlap with these between G and GF, and they are not all at the same time obviously these come and go.

I have an appointment to have an endoscopy on the 15th just ten days from now. Don't think that will be long enough to find anything out for sure so I'm going to have to extend that date. Problem is I won't be able to do it till January when I am back in NM.

Anybody have experience with gluten challenges?
 

Galixie

Senior Member
Messages
219
I am currently back on gluten after having been off of it for a couple of years.

My possible issues with gluten are a convoluted story that started with finding out I was B12 deficient. Blood tests for celiac were done and *mostly* came back negative.

The one antibody result that came back positive was not considered a marker for celiac but could be a marker for non celiac gluten sensitivity. I didn't know that at the time. I was simply told I didn't have celiac. So I continued to eat gluten.

A year or two later I had an upper endoscopy done (still looking for the cause of the B12 deficiency) and that test also did not find celiac.

That all seemed pretty conclusive, but I had finally started to question the one positive antibody result and I decided that the only way I was going to find out if I really was sensitive to gluten was to go without it for three months and see if it made a difference.

I did that and I didn't think anything changed at all. So, after three months, I started eating gluten again. I got really dizzy. I went back through my journal and realized I hadn't been dizzy while I was off of gluten.

There is something called gluten ataxia that is known to affect celiacs, but it is unknown whether it affects non celiac gluten sensitive patients. I decided to operate under the assumption that it could, and I stopped eating gluten until a few months ago.

Having finally been diagnosed as having low blood volume and getting medication to address that problem, it brought up the possibility that my ataxia was never gluten related. In order to test that theory I needed to start eating it again.

Things seemed like they were going ok, but I've been having stomach problems for weeks. I never had stomach problems before (on or off gluten), so I hesitate to think they are related to gluten. It's possible that it's just bad timing. I ended up having a second upper endoscopy done. It was negative for celiac again.

Whatever my problem is, I don't think it's gluten.

I hope you have an easier time finding answers than I did.
 

antares4141

Senior Member
Messages
576
Location
Truth or consequences, nm
I
I hope you have an easier time finding answers than I did.

Thanks for posting your experience Galixie.

My endoscopy was scheduled I think for tomorrow (0ct 14, 2018) but I bumped the procedure up to the 30th cause not only am I not having symptoms I really seem to be a lot better. Which isn't remotely what I had anticipated would happen.

So I'm thinking I am going to just cancel the procedure indefinitely until I have some of the symptoms I had 7 years ago before I quit eating gluten.

I'm never going to be convinced that my quitting didn't resolve a lot of issues I had at the time. I can't explain why they are not coming back though.
 

antares4141

Senior Member
Messages
576
Location
Truth or consequences, nm
I am currently back on gluten after having been off of it for a couple of years.

I think I forgot to include ataxia in my first post as a symptom. It was a prominent one that has mostley gone away. But it wasn't over night. It took a few years being off gluten if I remember correctly. I think there were a few confounding factors. Mainly the building I was living in at the time. I doubt I'll ever really know though.
 

Timaca

Senior Member
Messages
792
I'm glad to hear that both of you were able to resume eating gluten. I went on an elimination diet several years ago and gluten was one of the many things I gave up. I tried reintroducing oats (gluten free) and wheat a few years ago and it didn't go well. With wheat I felt very off balance and had significant shooting nerve pain in my legs, along with joint pain.

I have been able to eat berries this year though, and seeds. Cashews, pecans and almonds are also working for me. I am testing walnuts now. I hope to retest corn next as my reaction to that was less severe than to wheat or oats.

It's always nice when I hear that people are able to reintroduce foods. Good for you! I would love to be able to eat oats and wheat again. Since I have been able to reintroduce several foods recently, and I hear your nice stories, maybe someone I can eat those foods again also!

Best,
 

antares4141

Senior Member
Messages
576
Location
Truth or consequences, nm
I'm glad to hear that both of you were able to resume eating gluten.

Best,

Thank you Timaca. I am still waiting to see how long this last's. I remember when I first quit gluten I got like three days that were almost symptom free and I was mostly bed bound at the time. Than the symptoms mostly came back. It was a long time before all the above symptoms I listed abated.

I still struggle with a lot of debilitating symptoms that seem to come more than go. Right now I am doing really well relatively speaking. I worked well over 8 hours around my house yesterday. Without even having to take a nap after lunch.

A couple of months ago I would go days at a time without being able to do anything. And usually had to take long breaks after lunch. It was early summer out here in the S. central NM desert. I can't help wondering if it doesn't have something to do with all the airborne particles. Which there are a lot of because of the dry weather. And I got PEM that would last for a day or two from relatively little activity.

There are so many confounding factors with an illness like this. And so many things you can only speculate about cause there is no practical way to test for them.

When I first quit gluten 7 years ago I felt the same way as you. It almost seemed like the more things I avoided the more sensitive I got to the few things left that I was eating.

I was eating nothing but french fries, meat and some fruit for a while. I hate to think of what that did to my circulatory system. Before you couldn't see any of my veins and my bp was always low. It's markedly higher now.
 

Hip

Senior Member
Messages
17,824
Anybody have experience with gluten challenges?

I avoided gluten for decades, as I discovered long ago that it would cause depression within an hour of eating it (but no symptoms other than that). However, once I developed ME/CFS, I noticed that this bad reaction to gluten completely disappeared, and now I can eat bread, pizza, pasta, etc without any problems.

It does say in the Canadian consensus criteria that when you get ME/CFS, new allergies can appear, or old ones may disappear. I guess this occurs because of some immune system changes that arise when you get ME/CFS. Gluten intolerance is not an allergy as such, but it's still caused by the immune response.
 

antares4141

Senior Member
Messages
576
Location
Truth or consequences, nm
Been a month since I started eating gluten every day. I went ahead and canceled my endoscopy. (again) For good this time at least until I am willing to go through a consultation again so that I can schedule another endoscopy.
I'm probably going to reschedule in 2 months or when I start experiencing symptoms whichever comes first.

Not going to do this until I am sure I have some symptoms I can attribute to the gluten. I've actually felt better than I have in a long time. Been working long days around the house without hitting a wall. (PEM)
More or less anyways, nothing is black and white and everything is relative, if you know what I mean.

My advice to anyone considering doing this just go ahead and start eating gluten. Don't talk to a gastroenterologist and schedule an appointment cause they might want you to go through the consultation process again if you cancel or try to reschedule.
 

Hufsamor

Senior Member
Messages
2,768
Location
Norway
How fascinating!
I've had me for maybe 12 years.
After a doc found antibodies against gluten in my stool, some 10 years ago, and I avoided it completely ,
my stomach was so much better.
And if I tried to eat only a small amount, my body was aching, my stomach was aching,
and I would be bound to the toilet for ever.

About two years ago I got much worse with my me/CFs.
From 30-40 %job to almost housebound.
Then I suddenly discovered I could eat some gluten again!
Not like antares4141, but much more than before.
And other foods I've not tolerated before.

Big meltdown in my health, and all the sudden I could eat a sandwich every now and then.
It didn't make sense.
Never thought it could have to do with change in the immunsystem, but it doesn't sounds to crazy?
I thought maybe my body after all felt less stressed when I wasn't working, even though I feel more crappy than ever.

I can have some wine, and I have not had to use any allergic tablets (antihistamine) for the last year.
This has been impossible for many, many years.
 

antares4141

Senior Member
Messages
576
Location
Truth or consequences, nm
So an update. I am still not avoiding gluten. Don't seem to have any adverse effects. Did get the blood test in mid to early September last year. Came back negative. Didn't get the endoscopy cause it's invasive and I figure if I am not experiencing any of the symptoms I used to have and the blood came back negative. The benefit's don't outweigh the risk's and discomfort and difficulty and cost's associated with the test.

Will follow up with another blood test at some point. Depending on how much out of pocket it cost's me.
 

antares4141

Senior Member
Messages
576
Location
Truth or consequences, nm
" Did get the blood test in mid to early September last year (2018)."
Misspoke, that was approximately when I started the gluten challenge. The blood test which came back negative was in mid to early December 2018.
 

BeADocToGoTo1

Senior Member
Messages
536
Unless you have celiac's disease, or are sensitive to gluten, or have some type of microbiome dysbiosis eating gluten (in moderation) will likely be okay.

However, the indirect biggest benefit of temporarily going gluten free is the drop in excess and often nutrient poor carbs consumed.

Because gluten products are in almost everything fast food, processed, packaged, bottled or canned, by going gluten free you are cutting out a lot of unhealthy food. So, the benefit is not necessarily because of reduction in gluten, but the reduction in sugars and carb intake, blood glucose levels, insulin spikes, glycation of cells, systemic inflammation and oxidative stress.

But by going gluten free you also have to be careful to replace the vitamins and minerals that you would normally get from wheat germ through more variety of vegetables. And 'gluten free' is too often used as a marketing slogan and does not mean healthier. 'Gluten free' products often contain more sugar and other unhealthy fillers.

I went gluten free for just a couple of months to resolve SIBO, Candida and rebalance my microbiome. After that I still continue to follow a mostly Primal lifestyle when it comes to food. Since unknowingly poor, excess carb, food was the biggest underlying cause for my health issues I am very careful not to fall back into the trap of becoming a 'sugar burner'.
 
Last edited:

antares4141

Senior Member
Messages
576
Location
Truth or consequences, nm
Me too, last 3 or 4 years. I'm replacing carbs with beans and veggies which both have carbs but complex ones and in low concentrations. I do eat fruit everyday though. Definitely not into the keto or adkins thing.
I avoid processed carbs like the plague. This would include things like sugar that is added to foods like cerial for instance. Pie, pizza doe, condiment's, things like that.
 

BeADocToGoTo1

Senior Member
Messages
536
I avoid processed carbs like the plague. This would include things like sugar that is added to foods like cerial for instance. Pie, pizza doe, condiment's, things like that.
Cereals are seen as sugar to the body. They are often highly processed, with healthy bits removed for shelf life, full of herbicides, pesticides and chemicals, so also be careful with those.
 

antares4141

Senior Member
Messages
576
Location
Truth or consequences, nm
Yes, thanks. I have a weakness for cereal and you are right. I am trying to steer away from that. And wheat bread which probably also because of all the processing, despite the fact it's "whole grain" is probably bad for me. Certainly not something you want to eat if you're trying to loose weight.
 

antares4141

Senior Member
Messages
576
Location
Truth or consequences, nm
I am still eating gluten as of 01-28-20. Started gluten challenge sometime around 10/01/18. I had not been able to see any short term reactions to it. But after 14 months I am starting to wonder if maybe I am getting more of my flue like symptoms back. Having a lot of trouble after meals. Can't work to much beyond essential chores without some serious PEM. Brain fog seems to be worse.

I have come to the conclusion that I probably shouldn't eat gluten even though I am not sure how much if any it is affecting me. I'm thinking the long duration expousure is leading to a net loss in my overall health.

I've only had 2 blood test's. One by my Gasterinterologist back around 12/30/18. I dismissed this because I didn't really give the challenge enough time to show up in bloodwork. Had another test done around 12/30/19 but it was done by my PCP. IgA and tT-IgA. Both negative.

I am going to set up an appointment with my Gastro and see if these test's were adaquate. Explore the possibility of doing a biopsy.
 

BeADocToGoTo1

Senior Member
Messages
536
Sometimes gluten is blamed when it can also be something else. Malabsorption issues, SIBO, Candida overgrowth, stomach acid issues, too many carbs, alcohol, smoking, etc.

Have you checked how your blood sugar reacts to your food and drink intake? I use a little glucose meter at home.

Have you had these done recently?
  • Fasting blood sugar tests: e.g. HbA1c, triglycerides, c-peptide, insulin, ketones, glucose
Have you checked whether you have any nutrient deficiencies?
 

Rufous McKinney

Senior Member
Messages
13,251
Sometimes gluten is blamed when it can also be something else.

Its so tough sometimes to pin down- the culprit.

Something I am noticing here, is there is a digestive cycle..and if I blow it and just go munch on some Naan, at 11:30.....I can then have IBS problems..... I take some digestive tea after dinner and need to not eat anything else after that.

Or was that the brocolli...two servings in one day- flee brocolli. Some is going bad in the fridge, now.
 

antares4141

Senior Member
Messages
576
Location
Truth or consequences, nm
Sometimes gluten is blamed when it can also be something else. Malabsorption issues, SIBO, Candida overgrowth, stomach acid issues, too many carbs, alcohol, smoking, etc.

Have you checked how your blood sugar reacts to your food and drink intake? I use a little glucose meter at home.

Have you had these done recently?
  • Fasting blood sugar tests: e.g. HbA1c, triglycerides, c-peptide, insulin, ketones, glucose
Have you checked whether you have any nutrient deficiencies?
I do have an electronic thingy for checking blood glucose. When I first got it my average fasting was 70, 7 years later it averages around 90. I am 60 years old. My 3 year senior brother is diabetic now for 20 years. I've staved it off by watching my calorie intake and refined carbs.

It runs around 130 2 hours after a meal maybe on average.

I check it during mini crashes (death naps after meals) sometimes. Usually around 130.

I've wondered about one that monitors constantly. To see if I can find an anomaly that way. It would be very easy for me to believe that my crashes have something to do with a breakdown of some type of endocrinological process.

Also wondered about 24 hour blood oxygen monitoring since these crashes usually are accompanied by air hunger.

And the possibility of using a cpap machine and weather that might help alleviate some of my symptoms.

And bp and heart rate 24 hour monitoring since these are wakey also. My heart rate is unusually high at rest and bp has traditionally been very low especially durring crashes. Where something like 80 over 60, are not all that uncommon.

9 years ago when I first quit gluten I foolishly ate a lot of french fries cause I associated them with some relief in symptoms like all other things I have done this effect didn't last but I still ate them. My resting heart rate is higher now, still have the tachycardia, and lower bp during crashes. But all my veins in my forearms show now where they never did before. And my feet and hands get cold very easily where as it doesn't with others in similar situations.

So I try to stay away from fats like butter, and oils. Still eat red meat and drink milk which I suspect I react to occasionally. Don't eat cheese that much. Try to do greak yogurt every now and then.

Pound as many vegetables as I can stand. Eat lot's of fruit, and more complex carbs like oatmeal, potato's, rice.

My BMI is around 23 maybe now. Been as low as 22. It's hard to maintain that low.

I have no muscle mass at all. So I try to eat beans in place of the meat as much as I can stand.

Have you had these done recently?
  • Fasting blood sugar tests: e.g. HbA1c, triglycerides, c-peptide, insulin, ketones, glucose
Have you checked whether you have any nutrient deficiencies?
I got a really smug response from my pcp when I asked about celiac, thyroid, hep b, chlamydia, lyme. I fired him and got another pcp who did have the celiac test done don't know whether it was the same as a gastro doc would have done.