Gluten Challenge

[Taylor King]

I was diagnosed with celiac disease and have been gluten-free for about 19 months. My story is complicated and, as a result, I have doubts about my diagnosis. I asked to do a gluten challenge. My doctor said that if I do a gluten challenge I run the risk of staying sick even if I go back to gluten free.

I am looking for second opinion about the possible consequences of a gluten challenge (after being gluten-free for over a year) for someone who actually does Celiac disease, in case I really do have it.

Taylor

 

[cyclinglady]

Hard to say, without more information, but I would avoid the challenge.  
 

My last gluten exposure (2 years ago)  resulted in my developing my third autoimmune disorder: AI gastritis.  It was not there at the time of my celiac disease diagnosis.  I had a repeat endoscopy about a year after that gluten exposure.  I had developed new symptoms that could have been attributed to celiac disease.  This included GERD and autoimmune hives (those lasted six months).  I even trialed the Fasano diet which is a very strict gluten-free diet.  That and my DGP IgA antibodies and thyroid antibodies were literally off the charts.  Yet, the GERD persisted.  
 

So, my repeat endoscopy/biopsies revealed a healed, healthy small intestine, but I had a Gastritis polyp and  biopsies showed Autoimmune Gastritis (AIG).  It is supposedly common with autoimmune thyroiditis (as is autoimmune hives).  
 

I was initially diagnosed in 1997 with Hashimoto’s Thyroiditis.  My antibodies were over 2,000 (positive was over 35).  My thyroid was enlarged and I had nodules.  I went on a tiny dose of thyroid replacement which helped me feel better.  As the years went by, my thyroid medication was increased.   After going gluten free (celiac disease dx) in 2013, in a year my thyroid was no longer enlarged and the nodules were gone.  
 

I have no idea what the gluten exposure source was two years ago.  I suspect, that since I had a tooth infection, my three  courses of antibiotics may not have been gluten free despite my bests efforts to check.  I attribute this now to the fact that all raw materials and most of all antibiotics are manufactured in China or India with little (or none) over sight by the FDA.  (Another topic  as this is being presented to Congress now as this pandemic has revealed huge problems with medical supplies and drugs).  But I have no proof.  I do know that I know the gluten-free diet well as my hubby was gluten free 12 years before my diagnosis.  
 

Now, I am determined to avoid a 4th autoimmune disorder (I imagine RA or lupus is in the cards as both run in my family).  I sure want to avoid refractory celiac disease or cancer.    The gluten-free diet did managed to heal my thyroid or I should say, healing or calming down my autoimmune response helped stop the attack on my thyroid and small intestines.  A gluten exposure reactivated my celiac disease, thyroid and created the autoimmune hives and gastritis.  It is in my opinion that autoimmune is all linked.  Doctors should stop naming the body parts under attack.  They should just say, “You have autoimmune disease .  Right now it is attacking your small intestine, stomach, skin and thyroid.  Let’s work to calm down your autoimmune response with diet and maybe drugs.”

Only you can decide if a challenge is worth it.  Why are you doubting your diagnosis now?  Do you have enough support from family and friends?  

[Taylor King]

1 hour ago, cyclinglady said:

Hard to say, without more information, but I would avoid the challenge.  
 

My last gluten exposure (2 years ago)  resulted in my developing my third autoimmune disorder: AI gastritis.  It was not there at the time of my celiac disease diagnosis.  I had a repeat endoscopy about a year after that gluten exposure.  I had developed new symptoms that could have been attributed to celiac disease.  This included GERD and autoimmune hives (those lasted six months).  I even trialed the Fasano diet which is a very strict gluten-free diet.  That and my DGP IgA antibodies and thyroid antibodies were literally off the charts.  Yet, the GERD persisted.  
 

So, my repeat endoscopy/biopsies revealed a healed, healthy small intestine, but I had a Gastritis polyp and  biopsies showed Autoimmune Gastritis (AIG).  It is supposedly common with autoimmune thyroiditis (as is autoimmune hives).  
 

I was initially diagnosed in 1997 with Hashimoto’s Thyroiditis.  My antibodies were over 2,000 (positive was over 35).  My thyroid was enlarged and I had nodules.  I went on a tiny dose of thyroid replacement which helped me feel better.  As the years went by, my thyroid medication was increased.   After going gluten free (celiac disease dx) in 2013, in a year my thyroid was no longer enlarged and the nodules were gone.  
 

I have no idea what the gluten exposure source was two years ago.  I suspect, that since I had a tooth infection, my three  courses of antibiotics may not have been gluten free despite my bests efforts to check.  I attribute this now to the fact that all raw materials and most of all antibiotics are manufactured in China or India with little (or none) over sight by the FDA.  (Another topic  as this is being presented to Congress now as this pandemic has revealed huge problems with medical supplies and drugs).  But I have no proof.  I do know that I know the gluten-free diet well as my hubby was gluten free 12 years before my diagnosis.  
 

Now, I am determined to avoid a 4th autoimmune disorder (I imagine RA or lupus is in the cards as both run in my family).  I sure want to avoid refractory celiac disease or cancer.    The gluten-free diet did managed to heal my thyroid or I should say, healing or calming down my autoimmune response helped stop the attack on my thyroid and small intestines.  A gluten exposure reactivated my celiac disease, thyroid and created the autoimmune hives and gastritis.  It is in my opinion that autoimmune is all linked.  Doctors should stop naming the body parts under attack.  They should just say, “You have autoimmune disease .  Right now it is attacking your small intestine, stomach, skin and thyroid.  Let’s work to calm down your autoimmune response with diet and maybe drugs.”

Only you can decide if a challenge is worth it.  Why are you doubting your diagnosis now?  Do you have enough support from family and friends?  

Good point about autoimmune disease being linked. I have RA and Graves. Wow. Sorry to hear about your health issues.

Ok. So right before I had an endoscopy I was diagnosed and started treatment for MCAS by an immunologist. Over a year later, my GI doctor admitted that he actually believes my symptoms that led me to him were actually caused by MCAS (I have an elevated mast cell number in my gut). Also, I had negative bloodwork with the Celiac panel. They did find damage in my small intestines that "look like Celiac Disease;" however, I was also taking lots of NSAIDs on a regular basis. I have read a lot about NSAID damage looking like Celiac Disease. At the time I was about to go gluten-free, I asked my doctor if it could be NSAIDs and not celiac disease. He told me to stop NSAIDs. I asked how would we know if it was gluten or NSAIDs, and he said we will cross that bridge when we come to it.

I had a repeat endoscopy with a healed gut over a year after being gluten-free and with significant reduction of NSAIDs. But having my gastric symptoms blamed on MCAS, negative blood work, and the high NSAID usage has me doubting that I truly have Celiac Disease. Also, no history in my family.

Had my doctor been upfront about the point of no return once I went gluten free, I would have explored NSAIDs first. If removing those didn't heal my gut, I could have ruled that out as the cause.

I don't mind being gluten-free in general. I think with autoimmune disease, there is some benefit to avoiding gluten. BUT being Celiac is so different. It is socially isolating, you have to be so careful about CC, and basically living on high alert about gluten exposure. If there is a chance I don't have celiac disease, it would be a whole lot easier.

[Taylor King]

Oh! I should add that going gluten free has had no impact on my thyroid disease. Same dose of medication I've been on for years (I still have my thyroid).

[cyclinglady]

12 minutes ago, Taylor King said:

Oh! I should add that going gluten free has had no impact on my thyroid disease. Same dose of medication I've been on for years (I still have my thyroid).

While my thyroid nodules and enlargement are gone, I still take hormone replacement.  My thyroid was permanently damaged.  No longer visibly inflamed, but not working.  

[Taylor King]

Oh I'm sorry about your thyroid. My doctors have wanted to remove mine for years, but I have refused. 

I also want to add that in the entire time I've been gluten free, I've never felt I was glutened. I can't imagine that I have been 100% perfect with CC such a possibility. Again, it leads to doubt that I actually have Celiac Disease.

[cyclinglady]

I can see your dilemma.  Celiac disease or just MCAS.  
 

MCAS.  I have a standing order to have Tryptase measured at my local ER.  Since I feel better and avoid my known triggers (insect bites and Medications like NSAIDS), I have not pursued a formal diagnosis.  What can my doctors do?  More antihistamines?  Chemo drugs?  Nope.  Not for me.  So, I assume I have a mild case.  
 

My allergist suspects autoimmune or MCAS.  NSAIDS for me will cause hives, facial and tongue swelling.  Insect bites will cause hives and swelling and loss of consciousness.    In fact, even stress or pain will cause me to pass out.  (Recovery is slow from passing out.  I get pretty sick.  Hours of very low blood pressure.)

Your situation.  It would seem  that if you had MCAS, you would not be able to tolerate even a tiny dose of NSAID.  There is no way I would take any NSAID.  Anaphylaxis is so scary.  But maybe that is not one of your triggers.  What are your triggers?  

Edited June 19, 2020 by cyclinglady

[Taylor King]

I had hives, mostly from stress. I also am really sensitive to smells. I was diagnosed via bloodwork and 24 hour urine collection. What's weird, is I felt totally fine during the test. I did not feel like I was reacting to something or having a flare. 

Later, I had a genetic test by the Gene by Gene to see if I have extra tryptase genes. I have 1 extra copy. 

As a result of my MCAS diagnosis, I have been taking 5 mg of Montelukast (singulair) daily. I didn't tolerate the initial dose (10mg) and with my doctor's permission, stopped taking it. All my gastric symptoms that I thought were helped with the gluten-free diet, returned within a couple of days. I ended up compromising and taking 1/2 of the dose. The gastric symptoms improved again. 

During my colonoscopy they did mast cell staining. It's very specific specialized tests. And it revealed I have a much higher number of mast cells in my gut. This helps explain why my gastric symptoms were probably related to MCAS.

So I am really stumped about Celiac Disease. It's not a clear cut case. My doctor gave me permission to have a gluten meal and see how I react. His thought process is most people are going to be exposed to gluten accidentally anyway, despite every effort not to. 

Although, this is not his medical advice. He is trying to compromise. But if he had been forthcoming initially, I wouldn't be in this situation.

Due to covid-19, I have not tried gluten, in case I get really sick. 

[Taylor King]

I will add, I definitely suggest exploring a diagnosis for MCAS with a doctor who really understands it. Even if you don't pursue treatment. Also, there are great webinars online to learn more about it. It impacts more than we realize and they are learning so much. It's only been known about for about 10 years.

As far as not tolerating NSAIDs, it may have been causing damage I didn't necessarily feel. And the thing MCAS, is it impacts everyone differently. 

[cyclinglady]

I was not trying to dispute your MCAS diagnosis.  The proof was in finding too many mast cells in your gut.  Not to mention the 24 hour collection.  Your GI must have order the staining when he suspected or knew about MCAS.  
 

I can see why you are doubting a celiac disease diagnosis.  No lab work to support it firmly.  Just some villi damage which can be due to excessive NSAID use.  

Testing one gluten meal might not work.  Some celiacs react fast.  Recent research indicate it could be due Cytokine.  May be cytokine storm (yikes the same cytokine storm that might be causing COVID 19 deaths).  But other celiacs take days to ramp up antibodies to produce symptoms.  Who knows.  It might be something to keep researching.  
 

It would be nice if you can distinguish GI symptoms.  Unfortunately, for me, they tend to overlap.  It is why when I suspect a gluten exposure, I ask for a lab test.  Usually with celiac disease,  I start feeling worse over a period of days or weeks.  I can not seem to get better.  

I personally would  stay the course until this COVID 19 pandemic is under control or resolved.  But that is just me.  I would want to avoid the ER.    I Also live with someone who is at high risk.  His doctor told him not to get COVID.  Me?  I am in pretty good health now.  Riding the wave.  Hoping not to crash.  😆

[Taylor King]

Oh! The thought didn't even cross my mind that you were doubting my MCAS Dx! I was explaining more about my testing since that is a potential issue for you. There are specialists who will treat for MCAS even if the patient's test results come back negative, due to the symptoms. It's based on the many false negatives that occur. I was really surprised mine came back positive after hearing so many people who have more severe symptoms than me come back negative.

What labs do you request when suspecting gluten exposure? I'm thinking it wouldn't impact me if my bloodwork was negative when I was consuming gluten regularly.

I think I'm going to have to seek another GI's opinion on how to confirm Celiac disease. 

As far as the mast cell staining/testing from the GI doctor, that was quite a battle!!! He insisted I did not have MCAS issues in my gut. I couldn't find in the report where I had been tested. And I provided him documentation that doctors don't know how to test for MCAS. That it is highly specialized and provided a list of the specific tests and asked him to retest my samples.

He said we can do that next time, but he can't retest. So I contacted his lab and got instructions on how he can order tests on my previous biopsies. And insisted that he do that. Then didn't hear back despite many attempts.

Fast forward to when I was on the table for my repeat colonoscopy/endoscopy and he says, "By the way, I was able to run the MCAS tests and it turns out you have a high number of mast cells in your gut. In fact, I think your symptoms are actually from MCAS."

My goodness that was a challenge, but I had a doctor who insisted I didn't have an issue with MCAS in my gut to telling me that's why I felt so sick. It was quite a victory! I am the queen of advocating for myself with medical doctors. But that has taken years of practice!!!

Glad to hear you are feeling in good health!!!

[GFinDC]

Hi Taylor King.

Something else you could do is get the gene tests for celiac disease.  About 30% of people have one of the genes for celiac disease, but only 1% or so actually develop celiac disease.  So the gene test isn't a great tool for diagnosing celiac.  But it does indicate if you are in the pool of possible celiacs. That might be useful to know.  There are a few cases of people without the genes getting celiac, but they are rare.

[Awol cast iron stomach]

After my gluten challenge it took 2 years and 4 months to feel decent. I was unable to maintain my work schedule and eventually was no longer schedule d. I lost time as a mom. Time I regretfully will not get back. On some level the universe gave me a stay at home order this year and my kids were stuck with me. Maybe I can try to get back some of that sub par mom time. In short sometimes the bad gives us good too.

The good. I found out I can not live in a shared household. I found 3 conditions I was misdiagnosed with are gluten sensitivity based symptoms not the conditions. They do not remove those from medical records though.  My kids are off gluten, but if they ever decide to join the gluten eating world again they know celiac can pop up from my paternal side genes. When my kids went off gluten my son's keratosis pilaris  and eczema subsided. Just like mom. Did my undergoing my challenge prevent my son or daughter from celiac ? can I stop that train wreck for them? Since that was my number one goal I like to think so. I do not want to have them experience my issues to the degree I have .

I must clarify a very bad full on gluten exposure from a careless server sent me down the rabbit whole after I went gluten-free initially. I finally have the start of half moons on my thumb nails. I lost that part time job, but gained a full time job with an awesome commute years later. I still have my gallbladder ( 2 of my siblings and my father lost theirs) one of my Dr.'s believes that if I had continued misdiagnosed and living in a shared household I could have lost mine too. 

The DH is trigger sensitive now. I slept for like 2 years straight like I never have ever. I have to regain the muscle/fitness I lost . I hope I can.   I still have some really funky vagus nerve and low bp issues. I am not sure how damaged my nervous system is. It may heal. Genetically I have low bp on my paternal (same celiac side) it can go wonky at work etc. I had better control of it before the gluten-free challenge. The rheumatologist at the time of testing didn't find any AI issues. I take the gluten-free diet more strictly then ever. My disoriented immune system is trying to regain stability to the multiple intolerance s and sensitivities to scents etc. It is easier to understand the communication my immune statements without all the "white noise"

If I had not been "poisioned" by the waitress I was blissfully content being gluten-free . However I learned I was not given proper information about how strict I needed to be.

a challenge is a difficult decision to make. Ultimately, I think unfortunate events can reveal reaffirm celiac in time. For me I wanted to know for my children to know better what conditions mom really has/had. As they all led back to the long misdiagnosed gluten intolerance one. I have my children life and gave them knowledge of what I have lurking in my genes.

Good luck

 

[Awol cast iron stomach]

No idea why I  unable to edit my above post to correct my erroneous auto correct. I hope it makes sense. 

[Wheatwacked]

On 6/18/2020 at 9:49 PM, Taylor King said:

it leads to doubt that I actually have Celiac Disease.

My son was diagnosed by biopsy as an infant in 1976. He was one of only 14 patients in Israel diagnosed with Celiac Disease at the time. He resumed a gluten diet in 1980 and appeared to tolerate it until recently. In 2014 I began gluten-free diet and identified 18 different symptoms that improved, with no other treatment than gluten-free diet. They were all blamed on other things. My favorite is "we don't know why, but you have it, no cure". My problems range from unable to breath through my nose since childhood, sleep apnea, swollen prostate at 21 years old, alcohol addiction, protein buildup on my contacts never happens anymore, hair loss, back pain, cataracts, etc. You can Google a list of some 200 symptoms that have been connected to gluten. Gluten itself is addictive. So, consider, do you really want to play Russian Roulette? Wheat is the most traded commodity in the world, so there are plenty of reasons to convince you that autoimmune disease is a normal process. Once you mourn your loss you'll find foods you enjoy and don't make you sick. By quitting now you may not build up sensitivity. Inadvertent cross contamination may not become a daily fear.  

If you had not been eating gluten, you might not have needed all of those NSAIDs. 

[Taylor King]

Thank you for your responses! I still haven't tried gluten. Too risky right now with the pandemic. I do still want to pursue a second opinion, b/c there are too many grey areas with my Dx.