Non Celiac gluten sensitivity- symptoms after gluten free

[Glutendha]

Hello everyone,  

         I went gluten free before 6 months after 2 years of many symptoms. I am not celiac, biopsy revealed chronic inflammation. I tested positive for SIBO but decided not to take antibiotics for it as I was not convinced of the test results. I went to a functional medicine doctor and my symptoms improved after elimination diet for 45 days where I stopped eating top 8 allergens. I was able to eat eggs, dairy and nuts for couple of months. Now I feel very anxious and depressed after eating eggs and nuts. And my feets are also burning like before.                Anyone experienced this? I am clueless on what to do, I am planning to eliminate foods again. Any pointers would be very helpful.                  

[cyclinglady]

Did you have any positives on the celiac blood tests?  Small intestinal damage can be spotty since it is larger than the size of a tennis court!  

If you went on an elimination diet, you probably avoided foods that you had intolerances to.  Maybe you ate healthier and did not feed your SIBO with foods bacteria love.  Unless you find  the root cause of your symptoms, your diet may help like a bandaid, but may not permanently resolve your issues.  

With SIBO, diet can help, but you may have to consider antibiotics.  How were you diagnosed?  Why are you questioning that diagnosis?  Were you diagnosed by your GI?  Consider a second GI opinion and take your medical records with you.  What if your current GI did not take enough small intestinal biopsies and missed a celiac disease diagnosis?

I could have sworn my niece had celiac disease.  She was scoped from both ends.  Finally, a pill camera ordered by her 4th GI,  revealed damage from Crohn’s beyond the reach of both scopes.  I am sharing this because you should not give up.  Find the root cause.  

It  takes time to heal from celiac disease as the gluten free diet has a steep learning curve.  Make sure you are really gluten free if you choose to stay on the diet.  Know that future celiac disease testing does require you to be on a gluten diet months before a blood draw or weeks before an endoscopy. Add in SIBO and it can be difficult to heal.  Get checked for nutritional deficiencies which are linked with celiac disease and SIBO (and many other illnesses).  For example, B-12 can cause neuropathies.  

I wish you well.  

Edited January 29, 2020 by cyclinglady
Typos....ugh!

[Glutendha]

Cyclinglady, thank you for replying. Before my self diagnosis I had lot of symptoms. Burning feet, feeling off balance, pounding heart, muscle cramps, blurry vision, insomnia, 24/7 anxiety, PMS, night sweats . I went to different doctor's and most of the reports were normal. My gynec gave me B12 and B6. By the time I went to My GI doctor I was not eating gluten and few of my symptoms have vanished. He did not order a blood test. Severe bloating and burping were my complaints. So he ordered a biopsy and breath test. Why I feel the test results might not be ok was I ate something that was not in the food chart just b4 24 hours. Also i mainly eat rice and i dont have any bloating when i eat rice. I feel my symptoms worsens when I eat heavy protein like egg,nuts,legumes and red meat.

I am not eating any processed foods now. Everything is made by me but the new additions are dates and packaged coconut water. I moved to a new place and will find a doctor soon.

[cyclinglady]

Try researching the Autoimmune Paleo Diet.  It can help you identify food intolerances and possibly heal.  The AIP diet was tested at Scripps with Inflammatory Bowel Patients.  It was a tiny, tiny, study, but patients achieved over 70% remission just with real food!  

Dates are incredibly high in sugar.  Not sure if that is good for SIBO (and I would trust the breath test).  What did the GI biopsy?  The small intestine or stomach?  I would think what you ate before an endoscopy would not matter greatly.  Now for a colonoscopy, they are trying to clear out stool and do not want you to consume foods that could look like blood (like red Gatorade).  

The foods you mentioned that bothered you might be due to undiagnosed celiac Disease or the fact that you have SIBO.  A damaged gut can not digest most foods well.  After I get a gluten exposure, I have to eat only soft mushy foods for a while.  For example, no corn on the cob for me.  I do not have a corn intolerance but when my gut is irritated, whole corn kernels are a killer!  I can eat corn when healed.  

Keep a food chart.  Know that some celiacs like me never had symptoms from gluten prior to my diagnosis.  I was just anemic all the time.  

Hope you are able to find a doctor in the future who can help you.  Take care!  

[Glutendha]

Hi cyclinglady,

    The biopsies were done for duodenum, stomach and esophageal junction and the report says normal mucosa, no villi blunting, chronic inflammation.  I was mentioning about the SIBO test wherein I ate something just before 24 hours. Will definitely try the diet. Thank you for patiently replying.

 

Edited January 30, 2020 by Glutendha

[Posterboy]

On 1/29/2020 at 11:26 AM, Glutendha said:

And my feets are also burning like before.

8 hours ago, Glutendha said:

Hi cyclinglady,

    The biopsies were done for duodenum, stomach and esophageal junction and the report says normal mucosa, no villi blunting, chronic inflammation.  I was mentioning about the SIBO test wherein I ate something just before 24 hours. Will definitely try the diet. Thank you for patiently replying.

 

Glutendha,

I had your burning feet syndrome...it was diagnosed as PA...

Looking back on it though I am sure it was Beri Beri undiagnosed....my burning "pins and needles" in my feet and hands would wake me up out of my sleep a couple times a night...a classic sign of undiagnosed Beri Beri...search for Killer Rice or how too much rich crippled Tokyo and the Japanese Navy...here is a nice overview of the B-Vitamins that can help your Burning Feet syndrome....note: a enzymic B-Vitamin complex would be helpful here...because more than one B-Vitamin is suspected...

https://www.omicsonline.org/open-access/b-vitamins-for-neuropathy-and-neuropathic-pain-2376-1318-1000161.php?aid=90896

As for your SIBO....see this PearlStats article about SIBO and read especially their paragraph on a differential diagnosis of SIBO instead of Celiac disease....I think it will help you decide/discuss with your doctor's which one is really causing your problems.

https://www.ncbi.nlm.nih.gov/books/NBK546634/

I hope this helpful but it not medical advice.

Posterboy,

[Glutendha]

2 hours ago, Posterboy said:

Glutendha,

I had your burning feet syndrome...it was diagnosed as PA...

Looking back on it though I am sure it was Beri Beri undiagnosed....my burning "pins and needles" in my feet and hands would wake me up out of my sleep a couple times a night...a classic sign of undiagnosed Beri Beri...search for Killer Rice or how too much rich crippled Tokyo and the Japanese Navy...here is a nice overview of the B-Vitamins that can help your Burning Feet syndrome....note: a enzymic B-Vitamin complex would be helpful here...because more than one B-Vitamin is suspected...

https://www.omicsonline.org/open-access/b-vitamins-for-neuropathy-and-neuropathic-pain-2376-1318-1000161.php?aid=90896

As for your SIBO....see this PearlStats article about SIBO and read especially their paragraph on a differential diagnosis of SIBO instead of Celiac disease....I think it will help you decide/discuss with your doctor's which one is really causing your problems.

https://www.ncbi.nlm.nih.gov/books/NBK546634/

I hope this helpful but it not medical advice.

Posterboy,

Posterboy,

     Thank you so much for the links. I am on a good multivitamin from last 3 months which has all B vitamins. So the sudden onset of burning feet after couple of months of no burning makes me little worried.

     You mentioned you had this earlier. How long you had the symptom and how did you recover from it? Hope I heal soon.

[Posterboy]

21 hours ago, Glutendha said:

Posterboy,

     Thank you so much for the links. I am on a good multivitamin from last 3 months which has all B vitamins. So the sudden onset of burning feet after couple of months of no burning makes me little worried.

     You mentioned you had this earlier. How long you had the symptom and how did you recover from it? Hope I heal soon.

Glutendha,

I got lucky and found out about Magnesium before I found out about Thiamine....Magnesium is needed by the body to convert Thiamine to an active form used by the body...even good quality B-complexs unless they are enzymic B-vitamins has a low conversion rate in the body...try finding a fat soluble thiamine like Benfotiamine...it has a much higher utilization/absorption rate by the body....the website hormone matter has the best information about Thiamine... you have to connect the dot's as the hormones matter  website article says...

Here are some links that can help....I will try and check back in next week sometime if you still have questions they don't answer....I have to spend some time comforting a grieving friend over the next few days...I so I am trying to be brief to answer your questions....but the connecting the dot's article explains much of my experience with being low in Thiamine...and it sounds like your story might be similar to mine....

https://onlinelibrary.wiley.com/doi/abs/10.1111/j.0954-6820.1985.tb08836.x

https://www.researchgate.net/publication/259627300_Pharmacokinetic_Study_of_Benfotiamine_and_the_Bioavailability_Assessment_Compared_to_Thiamine_Hydrochloride

https://www.hormonesmatter.com/connecting-symptom-dots-discovering-thiamine-deficiency/

I hope this is helpful but it is not medical advise.

Posterboy,

[docaz]

It appears that many gluten-sensitives are caused to fructans. The body can not break down these complex sugars. There is an enzyme called inulinase, that could possibly work but at this time it completely prohibitively expensive because it is only made is small laboratory quantities. The FODMAP diet is something to consider and you can google it. Functional medicine pracitioners are very aware of this diet but not all know that this might help with gluten-sensitivities because for whatever reason, the studies that are easily searchable just did not get much attention. 

[Glutendha]

On 1/31/2020 at 7:15 PM, Posterboy said:

Glutendha,

I got lucky and found out about Magnesium before I found out about Thiamine....Magnesium is needed by the body to convert Thiamine to an active form used by the body...even good quality B-complexs unless they are enzymic B-vitamins has a low conversion rate in the body...try finding a fat soluble thiamine like Benfotiamine...it has a much higher utilization/absorption rate by the body....the website hormone matter has the best information about Thiamine... you have to connect the dot's as the hormones matter  website article says...

Here are some links that can help....I will try and check back in next week sometime if you still have questions they don't answer....I have to spend some time comforting a grieving friend over the next few days...I so I am trying to be brief to answer your questions....but the connecting the dot's article explains much of my experience with being low in Thiamine...and it sounds like your story might be similar to mine....

https://onlinelibrary.wiley.com/doi/abs/10.1111/j.0954-6820.1985.tb08836.x

https://www.researchgate.net/publication/259627300_Pharmacokinetic_Study_of_Benfotiamine_and_the_Bioavailability_Assessment_Compared_to_Thiamine_Hydrochloride

https://www.hormonesmatter.com/connecting-symptom-dots-discovering-thiamine-deficiency/

I hope this is helpful but it is not medical advise.

Posterboy,

Thank you for the links. The last one is a scary read. I have been in her shoes for sometime. But now lot of issues has the same symptoms. I have to meet a GI specialist soon. If I consume some foods I am shivering and sweating after I go to bed. Not sure what is happening again. 

[Posterboy]

4 minutes ago, Glutendha said:

Thank you for the links. The last one is a scary read. I have been in her shoes for sometime. But now lot of issues has the same symptoms. I have to meet a GI specialist soon. If I consume some foods I am shivering and sweating after I go to bed. Not sure what is happening again. 

Glutendha,

I can't say about the shivering...but sweating can be a sign of undiagnosed diabetes....

I have had night sweats myself...not related to the bowels but my blood sugar will give it to me...(not common) but I know it is up if I have night sweats...

You will probably have other symptom's as well if you sugar is high like dry mouth, frequent urination etc...maybe following asleep a little too much after large meals...if I have something with a lot of CARBS...this will happen to me...or at leas nod some...

I control the diabetes with diet and exercise...

I hope this is helpful but it is not medical advise.

Posterboy,

[mikemcm22]

Recently diagnosed celiac here... it took me 2.5 years to get diagnosed. I took all the blood tests on four occasions, all negative. 2.5 years later on my fourth endoscopy they finally took a biopsy to test and it came back positive. I don't know how rare it is for this to happen but it worth knowing that it can. I also have SIBO and have no idea what to do about it, it is terrible and still causing me great pain. Best of luck. 

[docaz]

1 hour ago, mikemcm22 said:

Recently diagnosed celiac here... it took me 2.5 years to get diagnosed. I took all the blood tests on four occasions, all negative. 2.5 years later on my fourth endoscopy they finally took a biopsy to test and it came back positive. I don't know how rare it is for this to happen but it worth knowing that it can. I also have SIBO and have no idea what to do about it, it is terrible and still causing me great pain. Best of luck. 

I can not possibly know what the biopsy looked like but please be aware that it is very common to confuse duodenits with celiac disease. It is extremely rare to have negative blood tests and have celiac disease if someone was not on a gluten-free diet before the test. If you have bacterial overgrowth, there is for sure an inflammatory reaction in the small intestine and it could be that this is what the biopsy showed.  The biopsy that confirms celiac disease is extremely specific (a particular ratio of neutrophils not just any leukocytes) and if it took 4 biopsies to come up with that and in combination with negative blood tests, I think that it is at least worth having a discussion with the doctor and looking at the biopsy in detail. I see so many people reporting that they are a rare case and I do not want to belittle it but in my career I have more often that the diagnosis was not right. Here is a paper suggesting that the tTG-IGA and EMA-IGA sensitivity is above 95% https://www.ncbi.nlm.nih.gov/pubmed/15825123

[cyclinglady]

1 hour ago, docaz said:

I can not possibly know what the biopsy looked like but please be aware that it is very common to confuse duodenits with celiac disease. It is extremely rare to have negative blood tests and have celiac disease if someone was not on a gluten-free diet before the test. If you have bacterial overgrowth, there is for sure an inflammatory reaction in the small intestine and it could be that this is what the biopsy showed.  The biopsy that confirms celiac disease is extremely specific (a particular ratio of neutrophils not just any leukocytes) and if it took 4 biopsies to come up with that and in combination with negative blood tests, I think that it is at least worth having a discussion with the doctor and looking at the biopsy in detail. I see so many people reporting that they are a rare case and I do not want to belittle it but in my career I have more often that the diagnosis was not right. Here is a paper suggesting that the tTG-IGA and EMA-IGA sensitivity is above 95% https://www.ncbi.nlm.nih.gov/pubmed/15825123

The link you provided was pretty old (published in 2005).  It did not mention the newer DGP tests which have replaced the AGA tests which were not that accurate.  

I test positive to only the DGP IgA.  I have never had a positive on the EMA or TTG tests and I had them run many times.   My biopsies revealed a Marsh Stage IIIB at diagnosis. Five years later, my small intestine had healed based on repeat biopsies.   My anemia also resolved.  

From my research, about 10% or more of celiacs can be seronegative.  

https://celiac.org/about-the-foundation/featured-news/2017/05/diagnostic-approaches-identifying-celiac-disease/

It is odd that MikeMCM22 had four endoscopies, but we do not know when they occurred, what was biopsied and the results.  I do know that my niece went through four PED GIs before a pill camera caught her Crohn’s diagnosis (damage well beyond the reach of both scopes).  Anything is possible.  

 

[cyclinglady]

3 hours ago, mikemcm22 said:

Recently diagnosed celiac here... it took me 2.5 years to get diagnosed. I took all the blood tests on four occasions, all negative. 2.5 years later on my fourth endoscopy they finally took a biopsy to test and it came back positive. I don't know how rare it is for this to happen but it worth knowing that it can. I also have SIBO and have no idea what to do about it, it is terrible and still causing me great pain. Best of luck. 

Know that some celiacs are seronegative or maybe you do not test positive to the standard screening TTG tests.  

Glad you have your diagnosis.  Sorry to hear about your having SIBO.  With plenty of time, you can heal.  Hang in there!  

[docaz]

9 minutes ago, cyclinglady said:

The link you provided was pretty old (published in 2005).  It did not mention the newer DGP tests which have replaced the AGA tests which were not that accurate.  

I test positive to only the DGP IgA.  I have never had a positive on the EMA or TTG tests and I had them run many times.   My biopsies revealed a Marsh Stage IIIB at diagnosis. Five years later, my small intestine had healed based on repeat biopsies.   My anemia also resolved.  

From my research, about 10% or more of celiacs can be seronegative.  

https://celiac.org/about-the-foundation/featured-news/2017/05/diagnostic-approaches-identifying-celiac-disease/

It is odd that MikeMCM22 had four endoscopies, but we do not know when they occurred, what was biopsied and the results.  I do know that my niece went through four PED GIs before a pill camera caught her Crohn’s diagnosis (damage well beyond the reach of both scopes).  Anything is possible.  

 

The two tests appear to be dependent on the age group and in adults, it is not clear which one is more sensitive. The increased potential sensitivity is also only in IgA deficient patients which is very rare so we are really looking for zebras here. Here is a write up comparing the two https://www.ncbi.nlm.nih.gov/pubmed/22197936  There is indeed a patient information sheet from the Mayo Clinic that suggests that 10% of celiac patients have negative blood tests. When looking at the peer reviewed publications, the actual number that is reported is less than 5 % false negatives and the number might be even less then 3%. Here is a patient information page from the University of Chicago https://www.cureceliacdisease.org/tag/false-negative/

This is actually consistent with the difference in opinions between the two major centers, the Mayo Clinic and the University of Chicago. I have been in touch with researchers from both institutions and I am more inclined to go with the U of C opinion. 

Regarding the write-up you mentioned, I am actually surprised that it is still on that site. It becomes in my opinion increasing clear that a biopsy is adjunct to evaluate the severity of the disease but not the gold standard because it is so often negative when the blood levels are positive. A gold-standard test should have a high sensitivity and a high percentage of false negatives.  Scoping every sero-negative patient is just unrealistic. 

As I mentioned, I do not know all circumstances but 4 negative biopsies and a bunch of negative blood tests followed by one positive biopsy does not sound right and it is worth looking closer at the actual biopsy findings and not just the diagnosis.  

[mikemcm22]

7 hours ago, docaz said:

The two tests appear to be dependent on the age group and in adults, it is not clear which one is more sensitive. The increased potential sensitivity is also only in IgA deficient patients which is very rare so we are really looking for zebras here. Here is a write up comparing the two https://www.ncbi.nlm.nih.gov/pubmed/22197936  There is indeed a patient information sheet from the Mayo Clinic that suggests that 10% of celiac patients have negative blood tests. When looking at the peer reviewed publications, the actual number that is reported is less than 5 % false negatives and the number might be even less then 3%. Here is a patient information page from the University of Chicago https://www.cureceliacdisease.org/tag/false-negative/

This is actually consistent with the difference in opinions between the two major centers, the Mayo Clinic and the University of Chicago. I have been in touch with researchers from both institutions and I am more inclined to go with the U of C opinion. 

Regarding the write-up you mentioned, I am actually surprised that it is still on that site. It becomes in my opinion increasing clear that a biopsy is adjunct to evaluate the severity of the disease but not the gold standard because it is so often negative when the blood levels are positive. A gold-standard test should have a high sensitivity and a high percentage of false negatives.  Scoping every sero-negative patient is just unrealistic. 

As I mentioned, I do not know all circumstances but 4 negative biopsies and a bunch of negative blood tests followed by one positive biopsy does not sound right and it is worth looking closer at the actual biopsy findings and not just the diagnosis.  

@cyclinglady @docaz I agree it was weird and honestly I am still not 100% sure what to believe. I saw this doc for a long time before this conclusion was reached, I was told this was the first time anyone did a biopsy relevant to celiac. Two weeks into gluten free my appetite went up significantly and I have slightly more energy. I did bread/pasta free diets in the past with no difference where my first truly gluten free diet ever was the first time I had any sort of improvement. I definitely don't know much beyond what I've been told as someone with no improvement for years it is something. Also, I don't know for sure since I still have varying symptoms daily, but I am fairly certain I have been glutened since going gluten-free. I'm talking those really bad cramps that put me in bed for the day. Again, I used to get those all the time so I am never 100% sure when this happens but I've traced a the few times this has happened to possible gluten exposure (I just assume everything has gluten and have been slowly adding stuff to my list, my diet is very limited). It is the best and most fitting answer I have at the moment. 

[Oceans]

On 1/29/2020 at 12:26 PM, Glutendha said:

Hello everyone,  

         I went gluten free before 6 months after 2 years of many symptoms. I am not celiac, biopsy revealed chronic inflammation. I tested positive for SIBO but decided not to take antibiotics for it as I was not convinced of the test results. I went to a functional medicine doctor and my symptoms improved after elimination diet for 45 days where I stopped eating top 8 allergens. I was able to eat eggs, dairy and nuts for couple of months. Now I feel very anxious and depressed after eating eggs and nuts. And my feets are also burning like before.                Anyone experienced this? I am clueless on what to do, I am planning to eliminate foods again. Any pointers would be very helpful.                  

You might have [thought] you went gluten free but it sounds like you might have gluten intolerance. I too had the tingling in lower legs and feet prior to being diagnosed Celiac. So most likely you're experiencing Vitamin deficiency especially Vitamin D.  Get some sun light or tanning using UVB lamps. 3 mins x3 weekly. You will see difference 

[docaz]

9 hours ago, Oceans said:

You might have [thought] you went gluten free but it sounds like you might have gluten intolerance. I too had the tingling in lower legs and feet prior to being diagnosed Celiac. So most likely you're experiencing Vitamin deficiency especially Vitamin D.  Get some sun light or tanning using UVB lamps. 3 mins x3 weekly. You will see difference 

Indeed, this sounds to me more like intolerance than celiac and the implications are very significant if it is one or the other. 

[Glutendha]

23 minutes ago, docaz said:

Indeed, this sounds to me more like intolerance than celiac and the implications are very significant if it is one or the other. 

I am also noticing an increased sensitivity to fructose. Ate half a cup of mango and unable to eat any foods after that. Couple of bites and I am feeling so full. Any thoughts?

9 hours ago, Oceans said:

You might have [thought] you went gluten free but it sounds like you might have gluten intolerance. I too had the tingling in lower legs and feet prior to being diagnosed Celiac. So most likely you're experiencing Vitamin deficiency especially Vitamin D.  Get some sun light or tanning using UVB lamps. 3 mins x3 weekly. You will see difference 

Thank you for sharing your thoughts. Currently taking vit D supplement. 

[docaz]

Just now, Glutendha said:

I am also noticing an increased sensitivity to fructose. Ate half a cup of mango and unable to eat any foods after that. Couple of bites and I am feeling so full. Any thoughts?

This would be completely consistent with sensitivity because in the last few years, researchers are strongly suspecting that most gluten sensitivities are actually caused by fructans (a complex sugar that the body can not break down) and not by gluten or the gliadin molecule that is responsible for celiac disease. Here is a write-up that summarizes some of the work regarding this https://www.vox.com/2017/11/21/16643816/gluten-bloated-carb-wheat-fructan-problem-fodmaps

[Glutendha]

4 minutes ago, docaz said:

This would be completely consistent with sensitivity because in the last few years, researchers are strongly suspecting that most gluten sensitivities are actually caused by fructans (a complex sugar that the body can not break down) and not by gluten or the gliadin molecule that is responsible for celiac disease. Here is a write-up that summarizes some of the work regarding this https://www.vox.com/2017/11/21/16643816/gluten-bloated-carb-wheat-fructan-problem-fodmaps

Thank you. Hope they find a solution. Eating low FODMAP when you have to take care of others as well is becoming hard. Do you have any recommendations? Will digestive enzymes help?

[Oceans]

26 minutes ago, docaz said:

This would be completely consistent with sensitivity because in the last few years, researchers are strongly suspecting that most gluten sensitivities are actually caused by fructans (a complex sugar that the body can not break down) and not by gluten or the gliadin molecule that is responsible for celiac disease. Here is a write-up that summarizes some of the work regarding this https://www.vox.com/2017/11/21/16643816/gluten-bloated-carb-wheat-fructan-problem-fodmaps

Yup. High Fructose Corn Syrup, Casein, lactose , spices like pepper and eventually,  CAFFEINE!

[docaz]

28 minutes ago, Glutendha said:

Thank you. Hope they find a solution. Eating low FODMAP when you have to take care of others as well is becoming hard. Do you have any recommendations? Will digestive enzymes help?

Do you want to start a business  ? There are enzymes called inulinase that break down fructans but they are very expensive because they are not produced in large quantities. They are only used for laboratory purposes and in very small quantities. If produced in large quantities, they would be as cheap as any other enzyme and based on the research they would work very well.  For gliadin caused problems, there are 3 enzymes that are very promising and I wrote on this site about them. Two are not available and one is.