Is this what it feels like to get Glutened???

[LindzeLindz]

Hello,

My name is Lindsay and I am wanting to discuss this phenomenon I have recently experienced, leaving me to question and wonder; Have I been glutened? 
I have had problems within the endocrine system pretty much my entire adult life. It all started when I was 23 (2008) with Gallbladder attacks which went on for almost nine months before finally being admitted to the hospital because a stone had lodged in my bile duct. Next came the hypothyroidism diagnosis in 2009. When the levothyroxine wasn’t getting the job done I was sent to an endocrinologist. From there I was diagnosed with Hashimotos disease. Finding the right dose and type of medication to control thyroid function has been a lifetime ride that I am still on. I had carpal tunnel surgery on both wrists in 2916. Recently I have also been prescribed supplements for Vitamin D and I was told that my liver function was low. I have been under a lot of stress because I just moved in with my mom and I am going through a divorce from my wife of ten years. 
I have been overweight my entire life. In January I started to lose weight, I wasn’t doing anything different physically, but mentally I had hit an exciting milestone when I had a breakthrough during my healing journey of suffering from severe PTSD. I moved home and left a very toxic environment in February 2022 so I have been contributing my weight loss to that…STRESS!!!

About 10 days ago I ate half a calzone for dinner, 25 minutes later I was in a stomach crunch position, sweating perfusion, all of my muscles were tensed up, and I was experiencing the worst stomach pains I’ve had in my life. The only thing that has come close is the pain I experienced with gallbladder attacks, which always landed me in the hospital. Three days later I had a bowl of spaghetti with red meat sauce and garlic bread. Well, the pain came back with a vengeance and on top of that I had a severe skin allergic reaction that caused itching, redness, and hives. I knew then something was wrong because I am allergic to sesame I knew that what I was experiencing was an allergy. I still managed to stay out of the hospital with Benadryl, ice compacts, anti-nausea medication, Tramadol, and sleep. After the pasta fiasco naturally I went to Dr. Google and read about getting glutened?? Had this happened to me? My endocrinologist tested me for Celiac in 2019 but came back negative and I wasn’t experiencing symptoms. However, fast track to present day and all of a sudden, literally out of nowhere I am getting very sick when I consume the one thing that I consistently consumed: GLUTEN!! Last night was the last attack and this time I almost went to the ER my stomach pain was so intense. I’ve also noticed that when these attacks come on, I feel bloated, constipated, my stomach becomes distended, and it feels like the food in my intestines is moving at a snails pace when my body really wants to push it out with fire hydrant force!!! I did take 2 stool softeners and this did help alleviate some of the suffering. Today I felt like I got beat up or did a power workout yesterday, every muscle in my upper body is sore.

I should mention I have also been misdiagnosed in the past with PCOS and took metforman for years before I finally dumped it down the toilet after my weight soared higher than it ever was. This brings me back to my weight loss! Since January 2022 I have lost approximately 50lbs. This is the most dramatic weight loss I have ever experienced. The photo attached (the picture on the right is me on 9/25/2021 and the one on the left is me 2 weeks ago). 
 

What I want to know is what are your experiences with being glutened? Is it possible that my negative celiac test was another misdiagnosis? My gut (no pun intended) intuition is telling me this is celiac disease. I have an appointment scheduled with my primary physician on the 17th. Can anyone give me advice on how to approach this appointment? Tell me everything I need to consult my doctor with? I know nobody with celiac, or even severe gluten intolerance, so I need any and all advice going into this appointment (my doctor typically sits back while I run the show). 

Thank you in advance! Please help me with anything and all things a newborn gluten intolerant 37yo female needs to do? I’m desperate!! 

[trents]

Welcome to the forum, LindzeLindz!

Your pictures did not come through, by the way.

First of all, unless you are eating gluten containing grain products regularly, serum antibody testing may be invalidated. The Mayo Clinic guidelines are the daily consumption of the equivalent amount of gluten found in two slices of wheat bread for 6-8 weeks leading up to the antibody test and for two weeks leading up to the endoscopy/biopsy. We have many people on the forum who started eating gluten free before testing and so sabotaged the test results.

Ask you physician to run a "full celiac panel", not just the tTG-IGA. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

The tTG-IGA is the most common test run and the one that combines good specificity with good sensitivity but it misses some who have celiac disease whose immune systems are responding atypically.

It is important to be eating gluten regularly until all testing is done. Your physician may want to follow-up the serum antibody testing with a referral for an endoscopy/biopsy.

NCGS (Non Celiac Gluten Sensitivity) is 10-12x more common than celiac disease and there is not test for it yet. Celiac disease must first be ruled out. They share many of the same symptoms.

[LindzeLindz]

2 hours ago, trents said:

Welcome to the forum, LindzeLindz!

Your pictures did not come through, by the way.

First of all, unless you are eating gluten containing grain products regularly, serum antibody testing may be invalidated. The Mayo Clinic guidelines are the daily consumption of the equivalent amount of gluten found in two slices of wheat bread for 6-8 weeks leading up to the antibody test and for two weeks leading up to the endoscopy/biopsy. We have many people on the forum who started eating gluten free before testing and so sabotaged the test results.

Ask you physician to run a "full celiac panel", not just the tTG-IGA. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

The tTG-IGA is the most common test run and the one that combines good specificity with good sensitivity but it misses some who have celiac disease whose immune systems are responding atypically.

It is important to be eating gluten regularly until all testing is done. Your physician may want to follow-up the serum antibody testing with a referral for an endoscopy/biopsy.

NCGS (Non Celiac Gluten Sensitivity) is 10-12x more common than celiac disease and there is not test for it yet. Celiac disease must first be ruled out. They share many of the same symptoms.

@trents

Thank you for the information. To be honest the sudden onset of the attacks I have been experiencing has made all of this very overwhelming, so I am starting a “journal” to make sure that when I have my appointment I’m not leaving anything out. On keeping at least 2 slices of wheat bread in my system up to the testing, does it matter how much I consume at one time? Can I do, for example, a 1/2 slice of bread over 4-6 servings a day to keep me from having full blown pain and skin reactions? Do you have any personal experience with attacks like the ones I am having? 
Also, for some reason I cannot attach a file, which I didn’t realize until after the post was published. So I cannot upload a photo. But the overall change in my appearance is unbelievable, some days I don’t even recognize myself. 
-Lindz

[Scott Adams]

The recommendation is just 2 slices worth of wheat bread daily for 6-8 weeks before a blood test, and 2 weeks before a biopsy.

[trents]

Lindz,

I cannot answer definitively whether spacing out your gluten consumption over a day as opposed to a larger amount at one time will affect the testing. Intuitively, however, I would think the pain you experience from eating a large serving reflects a more intense inflammatory reaction and would be better for the testing. Having said that, you need to be able to live with the pretest gluten challenge for a couple of months so if spacing the gluten consumption out over a day's time might be the best way to go when all things are considered.

Personally, when I get "glutened" my symptoms range from mild belly discomfort to intractable nausea and vomiting with intense gut cramping for two to three hours followed by diarrhea for another several hours. It depends on how much gluten I consume at one time.

One thing the celiac community knows from experience is that once you have been off of gluten for a significant period of time you lose whatever tolerance you had for it and any glutening episode will bring on a more severe reaction.

The file attachment tool is located in the three vertical dots at the upper right corner of any new post screen. You only have a short time to edit your post, however, before you get locked out of the edit function and would have to start a new post in order to add new information or a pic. This is a purposeful tactic so as to discourage spammers.

[Wheatwacked]

12 hours ago, LindzeLindz said:

Recently I have also been prescribed supplements for Vitamin D and I was told that my liver function was low.

Some vitamin deficiencies to think about:

1. Gallbladder and liver - choline deficiency
2. Thyroid - iodine and selenium
3. vitamin d - a healthy lifeguard in August has a vitamin plasma of 80 ng/ml. Vitamin D has autoimmune moderating effect and mood stabilizing. I require 10,000 IU a day to maintain it. My son, an ocean lifeguard in Florida, diagnosed when he was weaned in 1976 was recently tested for vitamin D and was low. He was told to take 400 IU a day. A cruel waste.
4. PCOS - Iodine again. It's no surprise that women with PCOS have a higher incidence of thyroid disease.

[Parent of celiac teen]

On 5/10/2022 at 3:06 AM, LindzeLindz said:

Hello,

My name is Lindsay and I am wanting to discuss this phenomenon I have recently experienced, leaving me to question and wonder; Have I been glutened? 
I have had problems within the endocrine system pretty much my entire adult life. It all started when I was 23 (2008) with Gallbladder attacks which went on for almost nine months before finally being admitted to the hospital because a stone had lodged in my bile duct. Next came the hypothyroidism diagnosis in 2009. When the levothyroxine wasn’t getting the job done I was sent to an endocrinologist. From there I was diagnosed with Hashimotos disease. Finding the right dose and type of medication to control thyroid function has been a lifetime ride that I am still on. I had carpal tunnel surgery on both wrists in 2916. Recently I have also been prescribed supplements for Vitamin D and I was told that my liver function was low. I have been under a lot of stress because I just moved in with my mom and I am going through a divorce from my wife of ten years. 
I have been overweight my entire life. In January I started to lose weight, I wasn’t doing anything different physically, but mentally I had hit an exciting milestone when I had a breakthrough during my healing journey of suffering from severe PTSD. I moved home and left a very toxic environment in February 2022 so I have been contributing my weight loss to that…STRESS!!!

About 10 days ago I ate half a calzone for dinner, 25 minutes later I was in a stomach crunch position, sweating perfusion, all of my muscles were tensed up, and I was experiencing the worst stomach pains I’ve had in my life. The only thing that has come close is the pain I experienced with gallbladder attacks, which always landed me in the hospital. Three days later I had a bowl of spaghetti with red meat sauce and garlic bread. Well, the pain came back with a vengeance and on top of that I had a severe skin allergic reaction that caused itching, redness, and hives. I knew then something was wrong because I am allergic to sesame I knew that what I was experiencing was an allergy. I still managed to stay out of the hospital with Benadryl, ice compacts, anti-nausea medication, Tramadol, and sleep. After the pasta fiasco naturally I went to Dr. Google and read about getting glutened?? Had this happened to me? My endocrinologist tested me for Celiac in 2019 but came back negative and I wasn’t experiencing symptoms. However, fast track to present day and all of a sudden, literally out of nowhere I am getting very sick when I consume the one thing that I consistently consumed: GLUTEN!! Last night was the last attack and this time I almost went to the ER my stomach pain was so intense. I’ve also noticed that when these attacks come on, I feel bloated, constipated, my stomach becomes distended, and it feels like the food in my intestines is moving at a snails pace when my body really wants to push it out with fire hydrant force!!! I did take 2 stool softeners and this did help alleviate some of the suffering. Today I felt like I got beat up or did a power workout yesterday, every muscle in my upper body is sore.

I should mention I have also been misdiagnosed in the past with PCOS and took metforman for years before I finally dumped it down the toilet after my weight soared higher than it ever was. This brings me back to my weight loss! Since January 2022 I have lost approximately 50lbs. This is the most dramatic weight loss I have ever experienced. The photo attached (the picture on the right is me on 9/25/2021 and the one on the left is me 2 weeks ago). 
 

What I want to know is what are your experiences with being glutened? Is it possible that my negative celiac test was another misdiagnosis? My gut (no pun intended) intuition is telling me this is celiac disease. I have an appointment scheduled with my primary physician on the 17th. Can anyone give me advice on how to approach this appointment? Tell me everything I need to consult my doctor with? I know nobody with celiac, or even severe gluten intolerance, so I need any and all advice going into this appointment (my doctor typically sits back while I run the show). 

Thank you in advance! Please help me with anything and all things a newborn gluten intolerant 37yo female needs to do? I’m desperate!! 

It is common to have a false negative blood test for Celiacs. Have you had an endoscopy with biopsy?

Your symptoms sound a lot like the symotoms my teen gets when she eats gluten. In addition to severe stomach pain, my teen says she feels like she got run over by a truck , is extremely tired and has brain fog after consuming gluten.  Her symptoms last for 2-5 days usually  

Further, Hoshimotos, an autoimmune disease, is not uncommon in Celiacs. When you have one autoimmune disease your risk for others is higher  

My daughter spent two years having doctors tell her her symptoms were growing pains and normal for a teen girl. 

When you see your doctor insist on another blood test. My daughter's gluten antibody levels were very low and I was told most doctors would not have done the endoscopy with biopsy with her levels. Thank goodness her endocrinologist did the endoscopy because she had severe damage to the villi in her small intestine  

Before going 100% gluten free her symptoms were: severe fatigue, severe joint pain, brain fog, anxiety,stomach pain and bloating,blisters in her throat,rashes.

good luck.  Dont give up until you get answers. I took my daughter to many doctors for two years until she was diagnosed with Celiacs!

[Wheatwacked]

4 hours ago, Parent of celiac teen said:

My daughter spent two years having doctors tell her her symptoms were growing pains and normal for a teen girl. 

Before my infant son was diagnosed by biopsy, they told my wife it just colic and it was her anxiety making it worse. They wanted her to take Valium.

[knitty kitty]

@LindzeLindz,

Welcome to the forum!

You said you've had gallbladder dysfunction, hypothyroidism and Hashimoto's, weight loss, liver function low, PTSD, bloating, constipation, metformin use.

Gastrointestinal beriberi is an insufficiency of Thiamine (Vitamin B1) which can cause gastrointestinal symptoms like you've described.  Thiamine is needed to turn carbohydrates, fats and proteins into energy so the cells in our bodies can do their work.  High calorie malnutrition occurs when we don't consume enough Thiamine to turn our food into energy. Highly processed foods, if enriched, don't contain enough thiamine in a form that our bodies can use easily.  

Gallbladder dysfunction can occur when we have insufficient Thiamine. 

The thyroid uses lots of Thiamine.  When we are insufficient in Thiamine, the thyroid can swing between hyper and hypo modes.  

The liver uses lots of thiamine.  Non-Alcoholic Fatty Liver Disease (NAFLD) can occur when we're low on Thiamine.  

Metformin is a drug known to induce thiamine deficiency by blocking thiamine transporters so that thiamine cannot be utilized.

PTSD is connected to Thiamine deficiency.  Anxiety and irritability are symptoms of Thiamine deficiency.  Unintended weight loss is another.  

The brain uses as much Thiamine as a marathon runner's muscles do.  When we are under stress, psychological, emotional, or physical, our bodies require more Thiamine.  

I've experienced all these dysfunctions.  Thiamine deficiency is under-recognized by physicians today.  My Thiamine deficiency progressed to Wernicke's Encephalopathy before I found information about what was happening to me.  My doctors were clueless.  

You can have Thiamine deficiency without Celiac Disease, but thiamine and other vitamin deficiencies occur in celiac disease because the small intestine is damaged where vitamin absorption occurs.  And it's rare to have a deficiency in just one vitamin.  I was deficient in Vitamins C, D and A, and the eight B Complex vitamins along with minerals like magnesium and copper.   

Here's some articles you might find interesting....

For PTSD information--

Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults

https://www.frontiersin.org/articles/10.3389/fpsyt.2019.00207/full

And...

Gallbladder problems explained--

https://www.hormonesmatter.com/tag/gallbladder-problems/

And...

The Missing Link to Thyroid Fatigue

https://thyroidpharmacist.com/articles/thiamine-and-thyroid-fatigue/

And... 

Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/

And...

Metformin Is a Substrate and Inhibitor of the Human Thiamine Transporter, THTR-2 (SLC19A3)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4800991/

And...

The Dramatic Recovery of a Patient with Biguanide-associated Severe Lactic Acidosis Following Thiamine Supplementation

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5364202/

And...

The effect of 90 day administration of a high dose vitamin B-complex on work stress

https://pubmed.ncbi.nlm.nih.gov/21905094/

Hope this helps!

[Parent of celiac teen]

11 hours ago, Wheatwacked said:

Before my infant son was diagnosed by biopsy, they told my wife it just colic and it was her anxiety making it worse. They wanted her to take Valium.

I am sorry your wife was "blamed" for your son's condition!