Celiac or gluten sensitivity

[katmar]

Hello everyone, 

I had been diagnosed with rheumatoid arthritis in the past (about 10 years ago) until a Dr. emphatically told me I don't have that.. I never really thought so.. then he promptly diagnosed me with fibromyalgia, chronic fatigue syndrome, myofascial pain disorder, etc. I have been on a few dif. treatments but luckily nothing worked! (I say that because I wouldn't have kept searching for a better answer!) One thing I did was go on a gluten free diet because I heard that would help. For the most part I felt better.. but I wasn't super strict about it at times. I started seeing a chiropractor about 2 years ago..  to help the fibromyalgia, etc. So they strongly suggest a diet without inflammatory foods.. no grains, no dairy, no processed foods, no sugar etc... (no medical Dr. would ever tell you those things) For the most part I have been eating this way... not perfectly but adequately. So in the past couple months it got me thinking that I probably have Celiac disease. How did I make that jump? I was recently glutened bad! And so I started reading some posts on here again. Although I was never diagnosed with DH I know without a doubt I had it as I look back. This recent "flare" reminded me of the way I used to feel all the time!!! It's been 2 years since I felt this way! I'm not willing to do the gluten challenge just to get a diagnosis. Whether it be Celiac, sensitivity, or wheat allergy I will be more careful. I will take all of your advice I've read recently. I will become almost paranoid about staying away from gluten! I won't eat out or trust that other people can cook for me.. I will follow a much stricter diet! Thank you everyone who has contributed! It is wonderful that you are all helping people like myself. So glad you are dedicated!

I would like to ask a couple of questions: Can a gluten attack or flare make you feel like you have the flu? That is how I felt but with constipation not diarrhea. I felt kind of light headed.. no appetite

From what I've read constipation can be a symptom of celiac disease. Is that before or after you get rid of the gluten? or could the answer be both?

How come Drs. don't think to diagnose celiac when they suspect an autoimmune condition?

Feel free to ask any question you like, I'm open book!

Thank you for your time! 

 

 

[cyclinglady]

Welcome!

Celiac disease can feel like you have the flu.  Body aches are common, along with extreme fatigue.  You can have both constipation or diarrhea with celiac disease.  Everyone is different.  There are actually 200+ symptoms.  

25 years ago celiac disease was thought to be non-existent in the states and then, like type 1 diabetes, was thought to affect kids only.  

[NNowak]

Welcome!

Sadly, it’s exhausting trying to get a diagnosis at times. Thankfully, you’re proactive and implementing natural healing methods so you’ll feel better. Proper nutrition for your body type will do wonders for your health and well-being!!

if you’re looking for a label for this, call yourself Gluten Sensitive - make sure it’s in your medical records and stated regularly, especially if you’re admitted to the hospital. After 24 years as a Celiac (diagnosed by blood and biopsy) my internist took a misstep with diagnosis and prescribed treatment because she couldn’t bother to look at my history. I had to go to a new GI who then wanted the labs from my original diagnosis in Dec 1995. Thankfully the original GI had joined a much larger practice with more availability with appts, so I returned to that office. So just make sure you have Gluten Sensitive in your records. It’s also a more widely acceptable label less prone to debate. You can go one step further and get the genetic test for Celiac. If you are positive for one or both of the genes, you can include the possibility of Celiac. If you don’t have the genes, you’re Gluten Sensitive. Either way, the treatment is the same. 
 

At age 19 I was told I had Fibromyalgia. I was chronically fatigued, had severe GI issues and “dermatitis” (DH). I was diagnosed Celiac at age 24 when I was skeletal and malnourished. Within a year I was running half marathons because I had so much energy and felt incredible. Through several pregnancies, miscarriages, life, I tested positive for lupus and RH. Stress has a profound affect on wellbeing!  After “resolving” the source of my stress, I was retested for lupus and RH. As I expected, antibodies were normal. Ten years later, I’m healing from an injury so my immune system is haywire again. Lupus antibodies are high, but also found out I have pernicious anemia, which is the cause of my balance issues that resulted in a fall and several fractures. I’ve also had horrendous migraines for 12 plus years, due to the B12 and subsequent Folate deficiency. My internist put me on a very strong epilepsy medication rather than find out why. I switched doctors and eliminated all but one med. 

Your flu like symptoms what some feel like after ingesting gluten. I get extremely tired, my stomach hurts and head feels heavy. The following day I’ll wake up with a migraine. A few days later I get little itchy blisters on my hands in small patches. Sometimes blisters inside my mouth. My daughter gets tired and has headaches with stomach pain. My son lives in the fog and you don’t want to follow him in the bathroom. However he’s 21 and knows more than me, so grains are his best friend. One sister gets a “body migraine,” while the other sister gets constipated.  Another sister deals with chronic pancreatitis and refractory sprue, so she is exceptionally controlled with her food and doesn’t touch gluten EVER. My niece throws up violently and is sick for days, while my nephew has definite behavior issues. There are many symptoms and everyone is unique.  
 

Hope you gain some insight from the responses and continue to feel better. 

[cyclinglady]

@NNowak

Wow!  Your story really resonates with me.   I am trying to find out how to keep my autoimmune response suppressed by using diet, exercise and maybe reducing stress.    I know that gluten exposures trigger more than just my celiac disease.  I am hoping to prevent a 4th autoimmune disease.  

I bet most of your family is not diagnosed (like mine).   The recent Mayo Clinic study determined that number of first-degree relatives who have celiac disease is much higher than they thought.  Like 44%!  

This is a message to anyone reading this post.  Please maintain all your medical records!  There is no doubt of my diagnosis because I have all my records.  My old GI was able to zero in on celiac disease because he saw my life-long pattern of anemia.  (I made a spread sheet to accompany my lab tests over the years).  When I switched health plans, I brought in copies of my records and presented them to my GI.  I also have a letter from my old GI stating that I have celiac disease and must be gluten free.  I carry a copy of it on my phone.  Have I had to use it?    Not yet.  Hopefully, I am never arrested!  

 

[NNowak]

Cyclinglady,

I commented on an earlier post about our similarities - crazy!  No, my family isn’t all about Celiac testing. My oldest son was diagnosed at 14 months old due to an immune deficiency. I had him tested again at around age 9 because the immune system isn’t mature under 2.  It came back positive because of all the gluten he was consuming at school and at friends. All of my children were gluten-free until their teens - in my home. Their father’s new wife found it inconvenient and declared herself a Celiac expert. She feels if they don’t react the second gluten hits their lips they aren’t Celiac. After years of futile attempts by me to educate, it comes down to father not willing to put the kids first. So my youngest child has had chronic, daily headaches for 2 years and terrible stomach pain. Without a positive Celiac test, there’s nothing I can do legally. She’s been diagnosed NCGS by an immunologist, but her father fought that, too, and refuses to provide gluten-free foods. 
 

I have seen the study from Mayo. Two of my sisters were tested, the other has Hashimoto’s and gets body migraines when she ingests gluten. I have both genes, two of my sisters have one gene. Don’t know about the sister with Hashimoto’s - she follows a gluten-free DF diet and doesn’t feel a diagnosis would change that. My mother has one gene. My grandmother had Celiac. Two of my sisters had their kids tested. Of the 14 grand children 9 are adversely affected by gluten ingestion and/or diagnosed with Celiac. 
 

I’m a huge fan of functional medicine because it focuses on healing naturally and they don’t bother with insurance and the restrictions therein. Practitioners simply heal rather than limit the time with a patient so they meet their quota for the day. Nutritional therapy is part of this, too. Ayureva is another area to look into. There’s a lot of research available online to get you thinking.  The body can heal itself if given the proper tools. ?

[cyclinglady]

I am riding the wave now!  Health is pretty darn good. But I know that the wave will die down and I will fall off.    I am “leashed” to my Gluten free board, so I am fairly safe. There are plenty of “sharks” out there and other “creatures” waiting to get me.  Luckily, I am physically strong, have some common sense, and have enough skills to ride the wave.  But I realize that I am not that great of a surfer, so I rely on this community and research to keep riding the wave in good form!