6 Months GlutenFree, but 1 step forward, 2 steps back?

[Pat Jackson]

I've had digestive problems most of my adult life (71 now), and have known for years that wheat was a problem, but I just lived with it because the various doctors over the years didn't test for celiac.  My gallbladder was removed 9 years ago (it didn't stop the abdominal pain, which wasn't very bad at that point).  I was diagnosed with osteoporosis before menopause, and the doctor just shrugged his shoulders and said he didn't know why I had it, but I've since had just about every treatment for it over the years.  About a year ago, the pain got to a point where I knew something was seriously wrong, so I saw a series of doctors, finally seeing a gastroenterologist, who ordered EGD and colonoscopy with biopsies.  The biopsy was positive for celiac, but the blood tests were negative for antibodies.  This was early March of this year, so I went totally gluten free immediately. I kept a food diary and took notes on how I was feeling each day.  My symptoms were clearly related to how much I ate at a time, even without gluten.  I get "full" after eating only a small amount, so I learned to pay attention to when my body was telling me to stop.   It took a couple of weeks to start feeling a little better, but then I had some problems getting gluten accidentally, and I found that my reactions when that happened were worse than when I was eating gluten regularly and every time I make a mistake, it seems to be worse than the previous episode. 

I know it takes a while to get the whole gluten free thing figured out, and I've learned a lot and have been doing a lot better over the last few months.  Then, towards the middle of August, I started to notice a difference in how I felt.  My appetite started to come back and I felt like I had more energy.  After about a week of this, I had a repeat EGD.  A couple of days later, I ate something that was supposed to be gluten free, but clearly wasn't because I was up all night with pain.  The doctor's office called the next day to say my biopsies showed no sign of celiac damage any more, but that I had gastritis in the stomach.  I thought my accidental glutening would make me uncomfortable for a day and then I'd be back to normal.  But here it is about 10 days later and I'm afraid every time I eat.   About 1 to 1.5 hr after eating I get extreme bloating and tenderness around the waist, abdominal pain under the lower left rib cage, and also sometimes the lower right abdomen.  I don't want to eat or drink anything and just want to spend the day on the couch (I'm usually pretty active), and I get lightheaded.  I often spend the night on the couch because the seats recline and are more comfortable than bed.  Then for the next few days, I only want to eat cream of rice and sweet potatoes.  Then I get constipated, which causes more pain.   I've lost about 40 pounds over the past year.

I have consulted a dietician, who was very helpful in helping me deal with the constipation issues that appear with every one of these episodes .  I  have trouble eating enough protein, which I wouldn't worry about except with the weight loss I think I probably need more than I'm getting.  She had me quit dairy for a while and that didn't seem to make any difference.  She also advised me to stay away from too much fat and the vegetables like broccoli, cauliflower, brussels sprouts, and beans, and also to quit my beloved diet coke for lunch every day.  It all helped.

1.  So, my main concern now is how much damage is done from an accidental glutening?  Am I setting back the healing a lot, or is my pain and discomfort just from some inflammation but not necessarily damage to the cilia?

2.  Also, a couple of months after going gluten free, I developed an annoying vocal tic.  The two doctors and the dietician all said they had never heard of that before and didn't think it could be related.  That's kind of a weird coincidence.  Has anyone else experienced this?

3.  Finally, I noticed a couple of months ago that I didn't seem to need the diuretic that I've been taking for many years.  The doctor had done many tests to see why my legs were swelling, but found nothing.  Now, all of a sudden, I don't seem to need it any more (or as much).  It seems like there should be a connection to the change in diet, but again both doctors and the dietician say they don't know why.

Sorry to write a book here, but this has been challenging.  Thanks for any advice.

 

 

[cyclinglady]

Welcome, Pat!  
 

You are right.  Having an autoimmune disease can feel like taking 1 step forward and 2 steps back.  You were undiagnosed for so long and have lots of collateral damage.  It will take time even though doctors tell you that you should heal fast on a gluten free diet. But we know better!  
 

Congratulations!  You have healed (at least in that moment of time) from celiac disease.  That is no small feat!  You are might be a seronegative celiac.  Or maybe you are like me.  I only test positive to the DGP IgA.  If my doctor had not ordered a complete celiac panel, my diagnosis would have been missed....again.  (I had the complete panel many times and I only get a positive on the DGP IgA).  
 

Sorry to hear about your gallbladder.  Mine was removed too long before my celiac disease diagnosis.  Non-functioning gallbladders are a family curse.  I also have osteoporosis.  Mine was caught right after my celiac disease diagnosis.  I fractured some vertebrae doing nothing.  Since I had just gone through menopause, I opted for Hormone Replacement Therapy and weight bearing exercise.  While I have not built bone, I have held steady per my scans and no more fractures.  
 

When I get a gluten exposure, it can hurt to eat anything.  I am talking mushy foods (think soups and stews) for all my meals for about a month. I dread eating.  Intermittent fast helps.   I fast for 12 to 16 hours a day.  Because I usually feel okay until it is time to eat again.  😥  Everyone is different though.  What I have  learned is that a gluten exposure triggers or activates my celiac disease.  Then it activates my Hashimoto’s.  The last time I was exposed to gluten (think it was an antibiotic, but no proof except an elevated DGP IgA but that confirms active celiac disease and not the source).  It happened when I had tooth infection, 3 courses of antibiotics, the flu, and a cold all within six weeks.  I developed chronic hives from the activated Hashimoto’s or maybe it was celiac disease.  I could not get better.  My GI recommended another scope, but I refused.  I went on a super strict gluten-free diet (no processed food) for months.  No luck.  I had developed GERD like symptoms.  Had to sleep in a recliner chair.  Water even burned going down.  
 

The repeat endoscopy I had almost a year later, revealed healed villi.  So, I had healed.  My GI found a polyp and gastritis.  Biopsies showed autoimmune gastritis which some say is linked to Hashimoto’s thyroiditis (autoimmune).   Ask your GI what is the cause of your gastritis.  With time, my gastritis calmed down.  I am riding the wave of good health right now.  But I am a smart surfer.  I know that I can crash at anytime, but I am enjoying it while I can!  
 

Questions:

1.  Everyone is different, but one gluten exposure should not cause severe damage.  It is though you would need multiple exposures.  But who knows? No studies!  
 

2.  Vocal tic?  Never hear anyone talk about it here.  But you can use the search button.

3.  My theory.  I am not a doctor.  Celiac disease or autoimmune is systemic. You might have another brewing or it might be celiac disease.  Bet healing has helped your legs!  It is all linked!  
 

Hope this helps and I bet my response is riddled with typos. 

[Pat Jackson]

Thank you, cyclinglady, for the comments.  It sounds like we have a lot in common (except for the Hashimoto's).  It certainly helps to know there are other people in the world who are experiencing similar things.  When I get sick, it feels so bad that I start to think maybe there's something else going wrong.  But then, after a few days I start feeling better and know that it was gluten all along.  Its just so hard to understand how such a small amount of gluten from some cross contamination can cause such a huge reaction. 

I never had the DGP IgA test.  Only the EMA IgA (Negative), the tTG IgA (3.7), and IgA (284).  Before the test, I had been staying away from most wheat for a long time because I knew it bothered me, but I did have a sandwich occasionally and I didn't know about the gluten in all kinds of other things that I was eating, so I was far from gluten free.

I have definitely learned a lot from reading this forum.  I feel less alone hearing other people's experiences.  And suggestions about what to eat and when to eat and what has helped other people all give me way more information than I have found anywhere else, so I am thankful you are all here.

[Claire grace]

On 9/2/2020 at 1:52 PM, Pat Jackson said:

I've had digestive problems most of my adult life (71 now), and have known for years that wheat was a problem, but I just lived with it because the various doctors over the years didn't test for celiac.  My gallbladder was removed 9 years ago (it didn't stop the abdominal pain, which wasn't very bad at that point).  I was diagnosed with osteoporosis before menopause, and the doctor just shrugged his shoulders and said he didn't know why I had it, but I've since had just about every treatment for it over the years.  About a year ago, the pain got to a point where I knew something was seriously wrong, so I saw a series of doctors, finally seeing a gastroenterologist, who ordered EGD and colonoscopy with biopsies.  The biopsy was positive for celiac, but the blood tests were negative for antibodies.  This was early March of this year, so I went totally gluten free immediately. I kept a food diary and took notes on how I was feeling each day.  My symptoms were clearly related to how much I ate at a time, even without gluten.  I get "full" after eating only a small amount, so I learned to pay attention to when my body was telling me to stop.   It took a couple of weeks to start feeling a little better, but then I had some problems getting gluten accidentally, and I found that my reactions when that happened were worse than when I was eating gluten regularly and every time I make a mistake, it seems to be worse than the previous episode. 

I know it takes a while to get the whole gluten free thing figured out, and I've learned a lot and have been doing a lot better over the last few months.  Then, towards the middle of August, I started to notice a difference in how I felt.  My appetite started to come back and I felt like I had more energy.  After about a week of this, I had a repeat EGD.  A couple of days later, I ate something that was supposed to be gluten free, but clearly wasn't because I was up all night with pain.  The doctor's office called the next day to say my biopsies showed no sign of celiac damage any more, but that I had gastritis in the stomach.  I thought my accidental glutening would make me uncomfortable for a day and then I'd be back to normal.  But here it is about 10 days later and I'm afraid every time I eat.   About 1 to 1.5 hr after eating I get extreme bloating and tenderness around the waist, abdominal pain under the lower left rib cage, and also sometimes the lower right abdomen.  I don't want to eat or drink anything and just want to spend the day on the couch (I'm usually pretty active), and I get lightheaded.  I often spend the night on the couch because the seats recline and are more comfortable than bed.  Then for the next few days, I only want to eat cream of rice and sweet potatoes.  Then I get constipated, which causes more pain.   I've lost about 40 pounds over the past year.

I have consulted a dietician, who was very helpful in helping me deal with the constipation issues that appear with every one of these episodes .  I  have trouble eating enough protein, which I wouldn't worry about except with the weight loss I think I probably need more than I'm getting.  She had me quit dairy for a while and that didn't seem to make any difference.  She also advised me to stay away from too much fat and the vegetables like broccoli, cauliflower, brussels sprouts, and beans, and also to quit my beloved diet coke for lunch every day.  It all helped.

1.  So, my main concern now is how much damage is done from an accidental glutening?  Am I setting back the healing a lot, or is my pain and discomfort just from some inflammation but not necessarily damage to the cilia?

2.  Also, a couple of months after going gluten free, I developed an annoying vocal tic.  The two doctors and the dietician all said they had never heard of that before and didn't think it could be related.  That's kind of a weird coincidence.  Has anyone else experienced this?

3.  Finally, I noticed a couple of months ago that I didn't seem to need the diuretic that I've been taking for many years.  The doctor had done many tests to see why my legs were swelling, but found nothing.  Now, all of a sudden, I don't seem to need it any more (or as much).  It seems like there should be a connection to the change in diet, but again both doctors and the dietician say they don't know why.

Sorry to write a book here, but this has been challenging.  Thanks for any advice.

 

 

A lot of us with celiac have other Coexisting conditions which may or may not apply In your case, however what you are describing sounds an awful lot like dysautonomia (which is a pre disposing factor for celiac disease) and something I have had my whole life.

 

It affects every part of your body that is controlled by the autonomic  nervous system. It is usually caused by compression of the Vagus nerve which can happen from dozens of different circumstances including genetics especially collagen disorders, Injuries like whiplash and even some viruses are suspected of triggering it to develop as a result of autoimmunity.

 

Symptoms include:

any type of digestive problem from Acid reflex hiatal hernia IBS GERD Gastroparesis etc

Cold hands and feet

Blood pressure irregularities

Occasionally  experience dizziness/ Light-headedness when standing too quickly from laying down

Fatigue

Stress takes more of a physical toll than it would to other people

You may have numbness or tingling in your hands or feet when you wake up sometimes, and It's not uncommon to have difficulty waking up or falling asleep (many people have both)

You may also have Hormone imbalances and other similar issues ie cortisol levels, Neurotransmitter's, hpa axis issues. 

 

Sometimes people have frequent dehydration and insufficient thirst  (you have to remind yourself to drink water throughout the day)

The list is Much longer but these are just some of the most common symptoms of dysautonomia.

 

 

[Claire grace]

If it is the case that you are experiencing dysautonomia as a result of your Spinal surgery or the condition for which you had it in the 1st place ( any inflammation or injury around the spine can cause compression of the vagus nerve) Depending on the extent and cause of the compression it can be temporary or permanent and symptoms can come and go. 

 

There are different treatments available depending on the underlying cause so the best thing to do is talk to your doctor about it  (a neurologist or a spinal surgeon would be experts on this subject). There is also a website dysautonomiaInternational.org where you can get more information and find specialists who can give you advice. 

Sometimes just knowing why it's happening makes it easier to deal with and identify and avoid possible triggers. 

 

 

[Pat Jackson]

Thank you Claire Grace for the information.  I will definitely look at the website.  I did have a spinal injury many years ago.  This is all so complicated.

[knitty kitty]

Pat Jackson,

Welcome to the forum!

You sound a lot like me, with lifelong digestive problems.  I've had my gallbladder removed, too.  And I also have osteoporosis before menopause.  And I was on a diuretic for edema in my legs.

I also have experienced problems with my voice.  I had a persistent tickle in the back of my throat, but coughing and clearing my throat didn't help.  I gradually lost the lower registers.  Several people told me I talked like a little girl.  I also developed a stutter.  And eventually I had difficulty talking at all.  

I have also experienced feeling full quickly, and the bloating and tenderness after eating. I craved carbohydrates, but lost weight, too.

I had POTS, Dysautonomia, Reynaud's, and panic attacks.

After a great deal of frustration with doctors, and much much more research (I'm a microbiologist), I realized that all these things are related to Thiamine deficiency.

Yes, thiamine deficiency is at the base of all these things.  Through my research, I came across Dr. Derrick Lonsdale and Dr. Chandler Marrs' book..."Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition" and their website www.hormonesmatter.com which explains so much.....

https://www.hormonesmatter.com/dysautonomia-hypoxia/

Dr. Lonsdale and Dr. Marrs explain how thiamine is needed by every cell in the body to properly function.  In diets that are high in carbohydrates, we don't get enough thiamine to process the carbs and turn them into energy.  

https://www.hormonesmatter.com/thiamine-insufficiency-carbohydrate-consumption/

The Vagus nerve needs lots of thiamine to function properly.  Without enough thiamine, the body becomes deregulated...

The Vagus nerve controls nerves that go to the vocal cords and throat...

https://www.hormonesmatter.com/thresholds-and-tipping-points-in-thiamine-deficiency/

And...

https://www.hormonesmatter.com/allergies-autonomic-response-thiamine/

POTS and thiamine deficiency...

https://www.hormonesmatter.com/thiamine-deficiency-causes-problems/

Thiamine deficiency is also a cause of osteoporosis....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4446754/#!po=8.73016

Sorry this seems so disjointed, but there's so much important information here I wanted to pass on.  

Feeling full with very little food is a symptom of thiamine deficiency.  Getting your appetite back is a sign of having more thiamine.

Swollen legs or edema is a symptom of thiamine deficiency.  Not needing as much or any medication to prevent edema is another sign of more thiamine in your diet.  Many diuretics actually cause a thiamine deficiency.  I was on one that did.

Constipation and losing weight without trying are symptoms of thiamine deficiency. 

I worry about eating too many carbohydrates, especially sweet potatoes, because they have enzymes in them that destroy thiamine making it useless to the body.  Without enough thiamine to process carbohydrates into energy, we get very lethargic.

Meats, especially liver, are great sources of thiamine.  Do try to include more meat into your diet.  I chose to supplement with high doses of thiamine like Dr. Lonsdale suggests.  Thiamine is not toxic even in high doses.

High dose Thiamine....

https://www.hormonesmatter.com/navigating-thiamine-supplements/

I started their high dose thiamine supplementation and have seen vast improvements.  I'm off all medications (blood pressure, diabetes, diuretics). 

My stutter is gone, I don't have that tickly cough, I have a deeper register. (I don't sound like a little girl anymore.)  My weight has stabilized.  I'm not bothered by the illnesses I mentioned above.  I have more energy. 

I know thiamine supplementation is not in mainstream medicine (run by Big pharmaceuticals that want to sell you expensive drugs so they can make money) but high dose thiamine supplementation does work. 

Do discuss thiamine supplementation with your doctor.  Thiamine is water soluble.  (If you don't need it, you pee it out.) There is no toxicity.  Thiamine is safe.  

Hope this helps!

 

 

 

12 hours ago, Claire grace said:

 

 

 

 

On 9/2/2020 at 3:52 PM, Pat Jackson said:

I've had digestive problems most of my adult life (71 now)

My gallbladder was removed 9 years ago.

I was diagnosed with osteoporosis before menopause.

 My symptoms were clearly related to how much I ate at a time, even without gluten.  I get "full" after eating only a small amount.

Then, towards the middle of August, I started to notice a difference in how I felt.  My appetite started to come back

About 1 to 1.5 hr after eating I get extreme bloating and tenderness around the waist, abdominal pain under the lower left rib cage

Then for the next few days, I only want to eat cream of rice and sweet potatoes.  Then I get constipated, which causes more pain.   I've lost about 40 pounds over the past year. 

I  have trouble eating enough protein, which I wouldn't worry about except with the weight loss 

2.  Also, a couple of months after going gluten free, I developed an annoying vocal tic.  The two doctors and the dietician all said they had never heard of that before and didn't think it could be related.  That's kind of a weird coincidence.  Has anyone else experienced this?

3.  Finally, I noticed a couple of months ago that I didn't seem to need the diuretic that I've been taking for many years.  The doctor had done many tests to see why my legs were swelling, but found nothing.

 

 

 

[Pat Jackson]

Thank you, Knitty Kitty!!  I am going to have a lot of reading to do this weekend!  And I definitely will.  It sounds like your experiences are pretty similar to mine, so I'm very interested in the thiamine.  I have also had some swallowing problems for years (its hard to swallow liquids, but not solids), and had a lot of testing and they found no reason.  They could see what was happening on the swallowing test, but couldn't explain it.  The doctor actually patted me on the back and said if I didn't worry about it so much maybe it wouldn't be so bad.  I was pretty offended.  But I figured if something was really wrong, either it would get worse and they could diagnose it, or it would stay the same or get better and I just would live with it.  It has been the same for maybe 20 years. 

I will try to eat more meat.  I don't really like meat too much, and ate vegetarian for many years when I was younger, so my natural inclination when I'm not feeling well is to eliminate meat.  I eat the sweet potatoes because they taste good, but maybe I will try to find something else for those days.

Thanks for the help!

 

[Svelte]

I also have some problems with my throat.  I don't think it's related to my celiac disease, except that the pain I have in my abdomen makes me nervous and my throat problem seems to happen when I'm nervous.