Struggling for years/ weight gain, IBS... missed diagnoses?

[Calpal]

Back in 2011 I dropped about 20 lbs, I had constant bouts of diarrhea and bloating. I had an EGD in late 2011 and after the procedure the doc was certain it was either celiac (most likely) or  crohns based on the inflammation and 20+ lesions in my small intestine. I was told to avoid gluten prior to this test and did so for a month (with some relief) About 2 years later my body started gaining weight, and now I am about 50lbs over that weight and consistently bloated. A few years ago I was diagnosed with hypothyroidism and insulin resistance. I still think there is an underlying diagnoses that was missed.  In 2019 I had another EGD, but “just” had the lesions inflammation and weird tissues where they “shouldn’t be”.  I’ve requested my path reports and doctors notes and am inquiring on a blood test. I do have a genetic predisposition to celiac. I’m ready to go gluten free, but obviously going to consult with my doc first. 
 

am I nuts for thinking it’s all possible to come down to a missed diagnoses? I’ve said for years, I don’t think my body is absorbing nutrients properly with constantly fatigue and brain fog. The weight gain is throwing me off on all this... 

[Fenrir]

It could be celiac, it wouldn't explain the weight gain but many people with celiac disease also have thyroid issues which would cause weight gain. 

The problem with EGDs is the Dr. has to know what they're looking for to DX celiac disease because they need to take biopsies from a specific portion of the small intestine. I had two of them done because the first time they thought it was an ulcer so they didn't take biopsies while they were in there. 

If they took biopsies and you weren't eating gluten for a month beforehand it would possible make your labs and biopsy comeback negative. Unfortunately the only way to DX celiac disease is to be eating it for a month or two prior to any testing. 

[cyclinglady]

Hi!  

Many celiacs can be overweight at the time of diagnosis.  Instead of wasting away, the body fights for nutrients and weight is added on.  

https://www.cureceliacdisease.org/wp-content/uploads/CdC_Newsletter_0513.pdf

What are you doing for your hypothyroidism?  Are you on hormone replacement (prescription)?  Autoimmune thyroiditis is common with celiacs.  Ask your doctor for additional thyroid screening, specifically looking for thyroid antibodies.  

How are you handling your insulin resistance?  On any medications or trying a dietary approach like restricting your carbohydrates?  Research is indicating that insulin resistance may be actually the cause of weight gain in some people.  

I think you need to wait for the results of your endoscopy and biopsies.  You might have celiac disease or Crohn’s.  If celiac disease, you know the treatment is a gluten free diet.  But if you have Crohn’s, you might consider researching the Autoimmune Paleo Diet which is also gluten free.  A tiny study at Scripps in San Diego tested IBD patients (UC and Crohn’s).  Within weeks they achieved a 78% or so remission based on lab tests.  Of course a larger study is needed, but unfortunately, it is costly.  

I could have sworn my niece had celiac disease, but a pill camera finally revealed (her 4th GI), Crohn’s.  I am sharing this because you should not give up!  Something is wrong! 

 

[Calpal]

19 hours ago, cyclinglady said:

 

What are you doing for your hypothyroidism?  Are you on hormone replacement (prescription)?  Autoimmune thyroiditis is common with celiacs.  Ask your doctor for additional thyroid screening, specifically looking for thyroid antibodies.  

How are you handling your insulin resistance?  On any medications or trying a dietary approach like restricting your carbohydrates?  Research is indicating that insulin resistance may be actually the cause of weight gain in some people.  

I am on levothyroxine and metformin. I’ve worked with dietitians, health coaches and rigorous diets and work out routines. In 6 weeks, 6 days a week and a low carb micronutrient plan and I only dropped 8lbs and within a week put it all back on. 
 

id like to avoid yet another endoscopy. Can it be diagnosed with Just a blood test and genetic test? 

[cyclinglady]

1 minute ago, Calpal said:

I am on levothyroxine and metformin. I’ve worked with dietitians, health coaches and rigorous diets and work out routines. In 6 weeks, 6 days a week and a low carb micronutrient plan and I only dropped 8lbs and within a week put it all back on. 
 

id like to avoid yet another endoscopy. Can it be diagnosed with Just a blood test and genetic test? 

Good that you are on medication.  So, your weight gain, if thyroid or insulin resistance related, is being addressed.  Why are you hypothyroid?  Ask your doctor for the cause.  Were your thyroid antibodies checked?  This can help with a celiac disease diagnosis or any other autoimmune disease.  Once you have one, you can develop more.  

Some folks do not have access to an endoscopy for all kinds of reasons (financial, insurance, provider issues or severe illness).   Some celiacs are diagnosed with blood tests (with improvements after being on the diet) and the genetic test (did you say you had a genetic test done or celiac disease runs in your family?). Talk to your doctor.  Get his or her support.  It is nice to have a rather firm diagnosis.  It may help you stick to the diet if you see lab changes whether it is antibodies decreasing or nutritional nail deficiencies resolved.  So, make sure you have been eating gluten daily for two months or so and then get a celiac blood test if you have not already.   Then repeat in six months and then at a year.  If positive and going down, you probably have your answer.    Again, this would be good for you because you just and an endoscopy and celiac disease was not seen or maybe biopsied for.  

The lesions are worrisome to me.  That sounds more like Crohn’s or did you take lots of NSAIDS?   But you can have both Crohn’s and celiac disease.  Maybe trialing the diet would be worth a shot.  You have had two endoscopies so far and one as recently as last year, so cancer, etc. has been ruled out.  The diet will not harm you unless you just eat certified gluten-free chips, ice cream and other junk food!  ?

The gluten-free diet might help Crohn’s too and the AIP diet is worth trialing.  Please research.  Anything to calm down your immune system.  And safer than biological drugs and steroids, but sometimes those are necessary.  

Consider easing up on exercise and taking time to baby yourself with gentle exercise like walking.  I teach exercise classes and am very active, but never when I am not feeling well.  Eat real food and that advice is for every person on the planet.

I hope this helps.