After gluten-free, Should I ‘challenge’ while waiting for GI appt?

[JenniK]

Hi all, 

New here. Been gluten-free for 2-3 years now due to chronic diarrhea. Was always diagnosed as IBS. Made the choice to go gluten-free on my own, and lo and behold, within a few days, there was dramatic improvement with that symptom. Then eventually, the joint pain that the drs thought was rheumatoid arthritis went away, my eyes stopped burning, my anxiety went away, etc... My GP, who I do really like, is of the opinion, if “gluten-free helps you, keep doing it.” Period. No other tests, etc. Forward in time, I have had recurrent shingles several times, something that is supposedly very rare, but is frequently connected to celiac patients, anecdotally. I also have a history of canker sores and tingling, numbness in my feet. The fleeting neuropathy in my feet is what seems to have really alarmed my doctor, especially when i told her that my father is completely debilitated with unexplained peripheral neuropathy. He cannot feel his feet at all and has had a lifetime of canker sores. No one has ever mentioned celiac or any diet changes to him. 

Now, i have an appt with a gastroenterologist, which is still a month away. I’m tired of all these delays between appointments and referrals, and cutting more and more things out of my diet feels like throwing darts while wearing a blindfold.  What am wondering is, if I want to be tested for celiac, should I go ahead and start myself back on gluten now, instead of waiting for the GI to tell me to? Also, should I first push for my GP to order genetic testing now, before my appt?  Is it not true that if I test negative for the genes, I will never be diagnosed as Celiac even if I am clearly intolerant? So I am thinking that I should get the genetic tests before I start a challenge, since the only point of the challenge is to rule out/ in celiac.  Advice? 
I am at the point where I do want an answer- i am tired of guessing. And also, if I am celiac, I want my three sons to be on the lookout for it— but what  is my best first step? (I know, I know, ask the doctor, and I have the appt, but we all know that sometimes they don’t take us seriously and miss celiac and NCGS...) 
 

 

[trents]

You would need to be on gluten (1-2 slices of wheat bread per day, or  the equivalent) for 8 weeks before blood antibody tests are done and at least 2 weeks before an endoscopy/biopsy is done. Otherwise, the tests will likely be rendered invalid.

Having the genes does not guarantee that someone will develop celiac disease. It only addresses the potential for it. There also needs to be a stress trigger of some kind to turn the genes on from latent to active. There is a 44% chance that your children or any first degree relative will develop active celiac disease at some point. Generally, it takes years before people with active celiac disease get a diagnosis so if there is any suspicion that your kid has developed active celiac disease, they should be tested.

Most docs are pretty uninformed about celiac disease. You must be your own advocate and take the bull by the horns.

[Scott Adams]

Quote

My GP, who I do really like, is of the opinion, if “gluten-free helps you, keep doing it.” Period. No other tests, etc. 

I must say that I'm with your GP here. If your initial results of going gluten-free were so dramatic, and you seem to be fine with being on a gluten-free diet, I'm not sure you should damage your health to try to verify celiac disease. FYI: 1% have celiac disease, while ~12% have non-celiac gluten sensitivity, and there is currently no test for gluten sensitivity. You may fall into the latter category.

I would get the genetic test done, which will at least give you an idea of whether or not you could have celiac disease, just so that others in your family can be more aware of it.

If you can't stand the gluten-free diet any longer, do the gluten challenge, but if you do the gluten challenge you should do the blood tests first, and this means ~8 week eating gluten.

[Scott Adams]

PS - Some of your current symptoms sound like they could be from vitamin deficiencies. Are you taking a good B multivitamin. I have some neuropathy issues and was helped with magnesium citrate and benfotiamine (B1).

[trents]

12 minutes ago, Scott Adams said:

PS - Some of your current symptoms sound like they could be from vitamin deficiencies. Are you taking a good B multivitamin. I have some neuropathy issues and was helped with magnesium citrate and benfotiamine (B1).

Agreed!

[JenniK]

Hi, thanks to both of you for your opinions.

My reasoning for considering the gluten challenge and testing is that although I know gluten-free helps, there are legitimate reasons to suspect that my gut was damaged earlier (including living for 7 years in a third world country) and thus, to wonder if it has healed or can ever heal. The question being: is this a celiac or gluten issue, or is this a damaged gut with ibs that is set off with a wheat or gluten trigger? ( i have other triggers too, like avocado and lettuce.) And what if it is not even gluten that I should be avoiding? I would hate to keep doing it forever if I am not even sure it is the actual problem. I CAN stay on the gluten-free diet, but the level to which I avoid it for the rest of my life, which also affects all my sons’ and husband’s meals and restaurant options, etc— would be different if I knew I was damaging my body and would never heal. Otherwise for me, there is always a temptation to wonder if I can tolerate it after many months being off it. 

For instance, for my own experiment, in the past month, I have purposely (and with great trepidation) tried one piece of homemade (i made from scratch) real pizza one time per week, with total gluten-free in between. So far, the main symptoms have not come roaring back, but I now have a mouthful of canker sores. The timing is not coincidental. I guess i am working my way up to a challenge, and that was my mini-challenge, because I am scared. (And, I’m sure you all will understand this: i don’t want friends and family to think that gluten-free is something I can just ‘cheat on’. I dont think that for people who know for sure. I am just trying to get to my ‘for sure.’)
 

Since my first posting this morning, I saw my doctor to show her my mouthful of canker sores. She ordered a whole new bunch of autoimmune blood tests. She also did a B vitamin test, so you guys were right to be concerned about that. She wants me to keep trying to eat more gluten “as long as it is comfortable” until I see the GI. She hopes things will still be inflamed when I see him. I am scared to eat anything, and now can’t even remember what was on my Wanted list. I am doubtful that the iga tst will show anything with that low level of gluten in my system (10 days since last 1 meal of gluten), but she said that since the canker sores look like an autoimmune response that maybe my system is flared enough to show something on the blood test. So, even if it is not celiac, she wants to see if the inflammation markers are up.

sheesh, sorry for the long post. Thanks

[Scott Adams]

Canker sores area common symptom of celiac disease:

 

[knitty kitty]

I take Lysine for my herpetic virus friends.  I've had shingles in the past and it's not fun.  And I have had problems with cold sores, especially after getting glutened.  I also get Bell's Palsy, one side of my face becomes paralyzed when the virus becomes active.  So I take 1000 mg of lysine daily and during herpetic flares, I double or triple the dose.  

Hope this helps!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6419779/

[JenniK]

Thanks. lysine is something I have used in the past, but I had forgotten about it. Yes, with the shingles and Bell’s Palsy, etc, it is interesting how often these supposedly unrelated “randomly triggered” issues strike in the same body. I hope you’re clear of them now. 

[JenniK]

13 hours ago, Scott Adams said:

Canker sores area common symptom of celiac disease:

 

Yes. That’s why i wanted my doctor to see when i inexplicably had a whole mouthful at once instead of just telling her that i get them. Even if it doesn’t mean Celiac, it clearly means something. Now, she is hoping that  I still have them when my GI appt rolls around. Of course, if you ask me, I’d rather NOT still have them in a month...

[AlwaysLearning]

Your description of your symptoms sounds like vitamin deficiencies to me. Though a deficiency panel is not a part of a regular doctor appointment where I live, I am a firm believer that they should be a part of a yearly check up. I would not take supplements unless you have actually tested as having a deficiency because most supplements have side effects of their own and are not bio-identical.

B12 is the deficiency that is commonly associated with neuropathies, and if the deficiency is severe, mouth sores too. B12 deficiency can be caused by many things though, such as not having enough meat in your diet, malnourishment (like we all suffered before going gluten-free), or if you have an overactive thyroid you could be burning through B12 too quickly. There are other causes that completely block B12 absorption, but rather than just supplement a deficiency, please do try to figure out the cause so that you can solve the problem rather than just learn to live with it.

For the canker sores, I would also look at your diet. There are plenty of foods that cause them if eaten in abundance. Ginger and apples are just two that I know of. 

There are several B vitamins so if you do test deficient, I would learn more about them and safe dosage levels and make sure to only supplement those that you need rather than just take a B-complex vitamin. High doses of B vitamins have been associated with heart attack and stroke and can be tough on your kidneys. Before taking any supplement, I would research extensively and then err on the side of caution when it comes to dosage levels until you've had a chance to pay attention to what your own body is telling you.

I'll leave the celiac testing question for others to answer. I don't have a lot of faith in testing because I think there is still a lot that isn't known/more research to do to help explain things like why some people test negative for celiac but are gluten intolerant. Even getting a negative test result won't mean that you don't have a problem with gluten.

[Scott Adams]

Quote

I'll leave the celiac testing question for others to answer. I don't have a lot of faith in testing because I think there is still a lot that isn't known/more research to do to help explain things like why some people test negative for celiac but are gluten intolerant. Even getting a negative test result won't mean that you don't have a problem with gluten.

I agree that until they get a reliable test for non-celiac gluten sensitivity most of what we're doing now is still missing the bigger picture. This looks promising:

 

[knitty kitty]

 

[trents]

Good read, KK and good summary.

[JenniK]

On 3/4/2021 at 1:21 PM, AlwaysLearning said:

Your description of your symptoms sounds like vitamin deficiencies to me. Though a deficiency panel is not a part of a regular doctor appointment where I live, I am a firm believer that they should be a part of a yearly check up. I would not take supplements unless you have actually tested as having a deficiency because most supplements have side effects of their own and are not bio-identical.

B12 is the deficiency that is commonly associated with neuropathies, and if the deficiency is severe, mouth sores too. B12 deficiency can be caused by many things though, such as not having enough meat in your diet, malnourishment (like we all suffered before going gluten-free), or if you have an overactive thyroid you could be burning through B12 too quickly. There are other causes that completely block B12 absorption, but rather than just supplement a deficiency, please do try to figure out the cause so that you can solve the problem rather than just learn to live with it.

For the canker sores, I would also look at your diet. There are plenty of foods that cause them if eaten in abundance. Ginger and apples are just two that I know of. 

There are several B vitamins so if you do test deficient, I would learn more about them and safe dosage levels and make sure to only supplement those that you need rather than just take a B-complex vitamin. High doses of B vitamins have been associated with heart attack and stroke and can be tough on your kidneys. Before taking any supplement, I would research extensively and then err on the side of caution when it comes to dosage levels until you've had a chance to pay attention to what your own body is telling you.

I'll leave the celiac testing question for others to answer. I don't have a lot of faith in testing because I think there is still a lot that isn't known/more research to do to help explain things like why some people test negative for celiac but are gluten intolerant. Even getting a negative test result won't mean that you don't have a problem with gluten.

Thanks for all the info. I do use a lot of fresh ginger, so that is interesting. But I have used it daily for a long time with no sores both before and after the flare, so ??

[JenniK]

UPDATE:

Thanks to all of you for your helpful suggestions. My blood tests came back showing my B12 levels are in the normal level, but barely. So I am adding those vitamins.

my Sed Rate was elevated. 

My celiac panel was negative, but of course it was bc I had only had a small amount of gluten a few times in the month before the test. (The test was a spur of the moment thing after the cankers)

My doctor does want me keep trying gluten until my GI appt, which is a month away. It’s been about five days now that i have been trying. Some days it is only a few crackers. One day a whole burger bun, twice a real brownie. I need to increase it probably. I DID feel reactions in my body, but honestly they were not what i was expecting. I was expecting diarrhea, but i went from normal to constipation and just stomach ache instead. (Both are unusual, but the ache is exactly the same as it was before I went gluten-free.) the nost pronounced change was that the pain in my hands and forearms returned. They just ached and felt stiff and swollen, even though they never look swollen. (This was a daily issue befire gluten-free, when they thought I had RA.) but strangely, so far, that issue with my hands has decreased instead of getting worse. It was like my whole system had a flare/ jolt when it first met the gluten, then it decided it was ok.  (Can that happen?) i must admit, that there are times, like right now that i feel perfectly fine. I feel so much better than I expected, but i have also been waiting/ expecting things to get worse. I am beginning to have hope that I have healed.... 

My system has always been known to flare and then calm though. When i am in a flare and my stomach is having daily Diarrhea, everything is a trigger and the cycle continues. Inversely when i can get it calm, i can tolerate things (like high fiber or salad) that set me off when in a flare. What does that sound like?
 

 

[trents]

1 hour ago, JenniK said:

UPDATE:My system has always been known to flare and then calm though. When i am in a flare and my stomach is having daily Diarrhea, everything is a trigger and the cycle continues. Inversely when i can get it calm, i can tolerate things (like high fiber or salad) that set me off when in a flare. What does that sound like?

 

 

Histamine intolerance?

[Scott Adams]

@JenniK Most celiacs don’t have obvious symptoms, or are asymptomatic. I would follow your doctor’s instructions and get the blood test in a month. Let us know how it turns out.