Lactose Intolerance, Self Diagnosed IBS, GERD & Muscular Skeletal Pain

[JFearH]

Hi Friends in Pain,

I am 32 Y/O M. When I was 22, I was diagnosed with anxiety and lactose intolerance. A few months later IBS and ever since I have not had a normal stool. From the age of 28 to 32, I started having tendon and joint issues. At first it was right shoulder injury followed by left shoulder, left heel, both knees, right hand finger, right elbow, left elbow, right heel, right hip, left hip and you name it. I have a history of weight lifting but I absolutely refuse to believe that all of these issues are weight lifting related injuries. For God Sake, I see guys at the gym twice my age with no apparent issues. I am tired of finding out what is wrong with me and feel depressed. My regular physician ran blood test and found out low vitamin d (26) and he refereed me to rhumatologist who could not find anything wrong with me after running a hundred tests. Could I still have Celiac or possible intolerance to gluten which could be causing the issue? I know alot of people are in the same boat as me but i am sure as hell desperate for answer

Edited February 25, 2020 by JFearH

[Fenrir]

Actually, yes, it could be celiac. Hard to know without getting tested. Anxiety and lactose intolerance are big problems for celiacs and many celiacs get misdiagnosed with IBS. I would certainly push your Dr. to have the proper testing done. See below:
 

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

[NNowak]

4 hours ago, JFearH said:

Hi Friends in Pain,

I am 32 Y/O M. When I was 22, I was diagnosed with anxiety and lactose intolerance. A few months later IBS and ever since I have not had a normal stool. From the age of 28 to 32, I started having tendon and joint issues. At first it was right shoulder injury followed by left shoulder, left heel, both knees, right hand finger, right elbow, left elbow, right heel, right hip, left hip and you name it. I have a history of weight lifting but I absolutely refuse to believe that all of these issues are weight lifting related injuries. For God Sake, I see guys at the gym twice my age with no apparent issues. I am tired of finding out what is wrong with me and feel depressed. My regular physician ran blood test and found out low vitamin d (26) and he refereed me to rhumatologist who could not find anything wrong with me after running a hundred tests. Could I still have Celiac or possible intolerance to gluten which could be causing the issue? I know alot of people are in the same boat as me but i am sure as hell desperate for answer

I’m terribly sorry you are struggling. It can take some celiacs 10-15 years for diagnosis. My recommendation is to see a functional medicine doctor ASAP and ask for testing for Celiac and NCGS. They will probably do a stool test to determine malabsorption and microbiome composition. Being a weight lifter, I’m confident you know what it feels like to be well and in your best shape. I’m a runner and have struggled since 2006. The last 3 years I’ve dealt with spine/rib fractures, punctured lungs, severe weight loss, etc. etc.  Many docs and specialists said my labs were great, and then told me I had sensitive nerve endings, here’s an antidepressant. Long story made short, it took a FM doc 6 weeks to figure out the problem and move forward with treatment. I’m now distance running again after struggling for 3 years - last summer I couldn’t even walk 100 yards.
 

Your symptoms could be a number of things, but you need to have it figured out. Don’t see a naturopath, integrative practitioner.......functional medicine requires an MD/DO and often it’s western med docs that wish to practice medicine completely ( ie. identify the source of the problem).  
 

Don’t be discouraged. Keep pushing for an answer. 

[JFearH]

6 minutes ago, NNowak said:

I’m terribly sorry you are struggling. It can take some celiacs 10-15 years for diagnosis. My recommendation is to see a functional medicine doctor ASAP and ask for testing for Celiac and NCGS. They will probably do a stool test to determine malabsorption and microbiome composition. Being a weight lifter, I’m confident you know what it feels like to be well and in your best shape. I’m a runner and have struggled since 2006. The last 3 years I’ve dealt with spine/rib fractures, punctured lungs, severe weight loss, etc. etc.  Many docs and specialists said my labs were great, and then told me I had sensitive nerve endings, here’s an antidepressant. Long story made short, it took a FM doc 6 weeks to figure out the problem and move forward with treatment. I’m now distance running again after struggling for 3 years - last summer I couldn’t even walk 100 yards.
 

Your symptoms could be a number of things, but you need to have it figured out. Don’t see a naturopath, integrative practitioner.......functional medicine requires an MD/DO and often it’s western med docs that wish to practice medicine completely ( ie. identify the source of the problem).  
 

Don’t be discouraged. Keep pushing for an answer. 

What was your diagnostic and treatment? and any other symptoms?

[NNowak]

My symptoms were extreme weight loss, pain and loss of balance/coordination, extreme exhaustion, severe migraines 15 or more days each month, nausea, hair loss, severe stomach pain in my URQ after eating, chest pain, watery black stool and confusion. After three years of nagging my internist and an accusation of anorexia, the labs revealed zero folate and low B12. She refused any further labs until I took folate supplements for 90 days. I can’t take vitamins because it exacerbates my symptoms. I saw 2 GI docs. The first said I had a lot going on and asked if I had an eating disorder, when I was diagnosed with Celiac and proof. So I returned to my original GI who diagnosed me 25 years ago. A random PA saw me, compiled a long list of things that would be tested for in the EGD and colonoscopy. Two months later I had the scopes with a random GI, who thought it was ethical to examine and question me under anesthesia. According to him, I admitted to an active eating disorder. He didn’t test for anything the PA ordered 2 1/2 months previous, and was extremely unprofessional when I called the office with questions. The findings from the scopes were esophagitis, hiatal hernia and peptic duodenitis. I was negative for H.Pylori and eosinophils.  He was supposed to rule out pernicious anemia, MCAS, refractory sprue and SIBO. Didn’t bother to test for any of that, and my lab report looked as if a second grader completed it. 
 

I ended up in the ER the day following the scopes. I had bleeding from both ends and severe pain. The CT showed granulomatous changes in my lungs and liver. When I asked the GI if this correlates with my extremely elevated ferritin, he said I needed to get that checked out.....huh??!!  
 

So I got in with a functional medicine doctor within a week. She ran blood, stool and saliva. Blood revealed low thyroid. Serum revealed very low cortisol and DHEA after decades of extreme stress. Stool showed malabsorption, inflammation and dysbiosis. I’ve been on bone broth and collagen since September (5 months) and have gained back 14 pounds. I was also started on low dose naltrexone late December. She will treat my SIBO once my GI has healed enough to tolerate the treatment. In the meantime, I’m also on B12 injections, DHEA, Thyroid, an adrenal supplement (my stomach isn’t tolerating this), a natural supplement to heal the GI and digestive enzymes. And continuing the bone broth daily. 
 

My energy level hasn’t been this high in decades!  It feels so good to run and lift again, and my thick curly hair is growing back. I’m kicking myself for waiting so long to see this FM doc. My husband also saw this doc because he’s big into weights and working out at age 52. He wouldn’t listen to me regarding his supplements, but he’s religious about what she ordered. Of course, he went through saliva (hormones and cortisol) and blood tests for her to determine his treatment. Despite his whining about testosterone pellets stuck in his hip, he has noticed a difference. 
 

I hope this answers your questions. Let me know if I missed something. 

[JFearH]

1 hour ago, NNowak said:

My symptoms were extreme weight loss, pain and loss of balance/coordination, extreme exhaustion, severe migraines 15 or more days each month, nausea, hair loss, severe stomach pain in my URQ after eating, chest pain, watery black stool and confusion. After three years of nagging my internist and an accusation of anorexia, the labs revealed zero folate and low B12. She refused any further labs until I took folate supplements for 90 days. I can’t take vitamins because it exacerbates my symptoms. I saw 2 GI docs. The first said I had a lot going on and asked if I had an eating disorder, when I was diagnosed with Celiac and proof. So I returned to my original GI who diagnosed me 25 years ago. A random PA saw me, compiled a long list of things that would be tested for in the EGD and colonoscopy. Two months later I had the scopes with a random GI, who thought it was ethical to examine and question me under anesthesia. According to him, I admitted to an active eating disorder. He didn’t test for anything the PA ordered 2 1/2 months previous, and was extremely unprofessional when I called the office with questions. The findings from the scopes were esophagitis, hiatal hernia and peptic duodenitis. I was negative for H.Pylori and eosinophils.  He was supposed to rule out pernicious anemia, MCAS, refractory sprue and SIBO. Didn’t bother to test for any of that, and my lab report looked as if a second grader completed it. 
 

I ended up in the ER the day following the scopes. I had bleeding from both ends and severe pain. The CT showed granulomatous changes in my lungs and liver. When I asked the GI if this correlates with my extremely elevated ferritin, he said I needed to get that checked out.....huh??!!  
 

So I got in with a functional medicine doctor within a week. She ran blood, stool and saliva. Blood revealed low thyroid. Serum revealed very low cortisol and DHEA after decades of extreme stress. Stool showed malabsorption, inflammation and dysbiosis. I’ve been on bone broth and collagen since September (5 months) and have gained back 14 pounds. I was also started on low dose naltrexone late December. She will treat my SIBO once my GI has healed enough to tolerate the treatment. In the meantime, I’m also on B12 injections, DHEA, Thyroid, an adrenal supplement (my stomach isn’t tolerating this), a natural supplement to heal the GI and digestive enzymes. And continuing the bone broth daily. 
 

My energy level hasn’t been this high in decades!  It feels so good to run and lift again, and my thick curly hair is growing back. I’m kicking myself for waiting so long to see this FM doc. My husband also saw this doc because he’s big into weights and working out at age 52. He wouldn’t listen to me regarding his supplements, but he’s religious about what she ordered. Of course, he went through saliva (hormones and cortisol) and blood tests for her to determine his treatment. Despite his whining about testosterone pellets stuck in his hip, he has noticed a difference. 
 

I hope this answers your questions. Let me know if I missed something. 

After reading all this, my symptoms are not even 10% of what you went through and im glad you figured it out. I tried home made bone broth for few weeks but didnt notice much difference. How are these collagen supplement? Do i need to take those in addition to the bone broth. Mind linking me the brand for those? Also which supplement helped you the most and after how long you started noticing a difference. Thanks for the help.

[NNowak]

This particular flare was due to mast cell activation syndrome and SIBO. Celiac symptoms vary by individual, so don’t measure your experience with anyone else’s. You are not well and you feel it. 
 

The bone broth I use is Kettle and Fire and Dr. Axe. Kettle and Fire is available on Amazon and my local grocery store. I order Dr. Axe from that website - I love the chocolate flavored bone broth and collagen, which I mix with coconut milk and some ice. Great for the gym. I consume either Kettle and Fire or Dt Axe bone broth AND collagen daily. I noticed a difference after 6 weeks. It can take 6-18 months to heal a damaged GI tract. I don’t feel comfortable recommending supplements as they can do more harm than good, sometimes. Perhaps a multivitamin with methylated Bs would be good. Dr. Axe has these supplements on their site, too. I do not have any affiliation with Dr. Axe, but have had good results with the products - my celiac sister also uses these products. 
 

DO NOT stop eating gluten until after you’ve had blood tests and a biopsy. I strongly encourage you seek a physician to help you. I’m an intense researcher with a deep knowledge of this “stuff,” and greatly appreciate the work of my functional medicine doctor. 
 

Let me know if you have questions.

[JFearH]

On 2/25/2020 at 9:57 PM, NNowak said:

This particular flare was due to mast cell activation syndrome and SIBO. Celiac symptoms vary by individual, so don’t measure your experience with anyone else’s. You are not well and you feel it. 
 

The bone broth I use is Kettle and Fire and Dr. Axe. Kettle and Fire is available on Amazon and my local grocery store. I order Dr. Axe from that website - I love the chocolate flavored bone broth and collagen, which I mix with coconut milk and some ice. Great for the gym. I consume either Kettle and Fire or Dt Axe bone broth AND collagen daily. I noticed a difference after 6 weeks. It can take 6-18 months to heal a damaged GI tract. I don’t feel comfortable recommending supplements as they can do more harm than good, sometimes. Perhaps a multivitamin with methylated Bs would be good. Dr. Axe has these supplements on their site, too. I do not have any affiliation with Dr. Axe, but have had good results with the products - my celiac sister also uses these products. 
 

DO NOT stop eating gluten until after you’ve had blood tests and a biopsy. I strongly encourage you seek a physician to help you. I’m an intense researcher with a deep knowledge of this “stuff,” and greatly appreciate the work of my functional medicine doctor. 
 

Let me know if you have questions.

Sorry it took me a while to get back to you. I hope you get to read my message. I got my celiac testing done.

 

TISSUE TRANSGLUTAMINASE AB, IGA => 1 U/mL (Normal Range < 4)

IMMUNOGLOBULIN A => 170 (Normal Range  47-310 mg/dL)

Does this mean i do not have celiac? I still have lactose problem for 10 years and im not sure if i mentioned this or not but in the last year or 2 i also developed allergies to eating any kind of red meat, I am fine with chicken or fish so that is where i get my protein intake from. I have also tried a few things in the last year or so with zero luck. I have tried a home made bone broth soup which after a few days started giving me diarhea and a headache so i figured i was reacting to something which i wasn't sure. Lately I also got L Glutumine supplement and had the same reaction with that. Even though as long as I avoid trigger foods (beef, coffee, high fiber vegetable) for me i do not have much issue going to the bathroom but in general I have not had much luck with probiotic or found something that works. I am so lost!

 

[cyclinglady]

@JFearH

You only had the screening celiac blood test.  While it catches most celiacs, it does not catch all.  You can try the other celiac tests (EMA and DGP). Know that some celiacs are seronegative, so going to an endoscopy should be considered (discuss with your doctor).  Make sure you are not gluten free when testing!  
 

You mentioned a beef allergy.  Have you been bitten by a tick?  One tick has been known to cause an allergy to beef and Lyme  and celiac disease often share “like symptoms).  

[JFearH]

Dont recall getting bit by a tick but red meat allergy started recently. Dont think my rheumatologist tested me for lyme. I think he tested Lupus though

[cyclinglady]

Here is more about the red meat allergy....

https://www.mayoclinic.org/diseases-conditions/alpha-gal-syndrome/symptoms-causes/syc-20428608

and for Lyme, some people do not get the classic bulls eye rash...band you had joint pain....

https://www.mayoclinic.org/diseases-conditions/lyme-disease/symptoms-causes/syc-20374651

 

Edited July 28, 2020 by cyclinglady

[knitty kitty]

Sounds like what I experienced with Histamine Intolerance and Mast Cell Activation Syndrome.  

You can have Histamine Intolerance and MCAS without being Celiac.  

I found this article about Red Meat causing high histamine levels...

https://mastcell360.com/are-you-raising-your-histamine-levels-with-these-meat-handling-mistakes/

Bone Broth is a high histamine food.  So is dairy.  (Some people simply lose the ability to digest dairy as they age, it's programmed in their genes.)

I had a bad experience with l-glutamine supplements, too.  The body can produce l-glutamine by itself.  If you're a good glutamate producer, your body can make plenty and supplementing with l-glutamine can make you feel worse.  So don't feel bad it didn't work for you. 

I also had to discontinue taking my probiotics.  I found out those little microbes can produce a bit of histamine as well.

The body normally releases histamine as part of its defense mechanism to destroy harmful things we've ingested.  Ingestion of foods naturally containing high levels of histamine and our bodies' release of additional histamine can cause excessive reactions. 

Histamine release is a part of the "fight or flight response."  Histamine causes an adrenaline rush in order to rev up our mind and body for quick action in order to fight or evade the perceived threat.  Heightened senses such as an increased sense of smell and hearing results.  

Unfortunately, too much histamine is a bad thing, especially for our brains, resulting in  migraines and mood changes, or sometimes shutting down altogether and collapsing.   

Our bodies utilize Vitamin C, Niacin (nicotinic acid, the kind of niacin that makes you flush), B12, B6, Magnesium, and Vitamin D to break down the histamine and calm down from that adrenaline rush.  Blueberries help, too.  (Weird science-y fact I thought I would throw in.😸) 

I removed nightshades (potatoes, tomatoes, peppers, and eggplants) as well as beans (legumes) and quinoa from my diet for a while, too.  Lamb is low histamine.  Beef liver is low histamine and a great source of those needed vitamins!  (Steam saute liver to make it tender.  Frying dries it out so.)  Frying and grilling raises histamine levels. Boiling or steaming keeps histamine levels low.

Try the Low Histamine Diet to avoid foods with high histamine levels.  Keep a food/mood/poo'd journal to keep track of your triggers.  It will be useful to show the doctor.  Also consider supplementing with your doctor's approval.  Not a doctor.  Just been there, done that, and got a t-shirt.  😺

Hope this helps!

 

15 hours ago, JFearH said:

I still have lactose problem for 10 years and im not sure if i mentioned this or not but in the last year or 2 i also developed allergies to eating any kind of red meat, I am fine with chicken or fish so that is where i get my protein intake from. I have also tried a few things in the last year or so with zero luck. I have tried a home made bone broth soup which after a few days started giving me diarhea and a headache so i figured i was reacting to something which i wasn't sure. Lately I also got L Glutumine supplement and had the same reaction with that. Even though as long as I avoid trigger foods (beef, coffee, high fiber vegetable) for me i do not have much issue going to the bathroom but in general I have not had much luck with probiotic or found something that works. I am so lost!

 

11 hours ago, JFearH said:

Dont recall getting bit by a tick but red meat allergy started recently. Dont think my rheumatologist tested me for lyme. I think he tested Lupus though