I seem to have symptoms of Celiac Disease or a gluten-intolerance.

[34 year old male]

Hi, sorry for my long story, I just wanted to give all of the information relating to my situation before asking for advice. 

I am 34 year old male, married father of three. As a child and teenager I was very physically fit and always had lots of energy. When I graduated high school, I was 6'2" and about 170 lbs. At the age of 17-18 I began gaining weight. I chocked it up to just getting older. When I got married at 20 years old, I had blood work done for life insurance and had a higher rate than normal due to elevated liver enzymes. I did not drink much alcohol so I figured it was just a fluke. By the age of 24 I was 330 lbs. I also had progressively developed what I considered to be some form of IBS. I never had solid BM's anymore and all BM's were very loose and irregular. No amount of fiber such as Metamucil or fiber supplements seemed to make my BM's more solid or consistent (sorry if this is too much information). In 2011 I was concerned about my weight and health, so I consulted with my primary doctor. After physical examination, blood work, urine analysis, and a sleep study, I was told that I had high blood pressure, pre-diabetes, sleep apnea, psoriasis on scalp, non-alcoholic fatty liver disease (NAFLD), insulin-resistant, and that I was morbidly-obese. I was advised to diet and exercise to lose weight which should counteract most of these symptoms. I tried quite a bit of various diets. Through each diet I found that by eating less and exercising more, I could always lose weight but just felt terrible. 

My brother is one year younger than I and very similar in body type and size during all of this. In 2016 he lost over 80 lbs by "cutting out all bread" (his words). In February 2017 I decided to do the same. I may not have been completely gluten-free, but I cut out all breads and anything that contained wheats or grains. I basically ate anything in natural form that God made which included primarily meats, eggs, and vegetables. I did not eat anything processed. I did not work out or add any extra exercise whatsoever. I just changed what I ate without really knowing any science behind it other than that is how my brother lost weight. Within six months I dropped from 330 lbs down to 270 lbs. I felt great, I looked great, I had tons of energy, the "psoriasis" type rash on my scalp had gone away, I slept great, and I had regular firm BM's again for the first time in 13 years.  I then went back to my primary doctor and had my labs checked again. He was astonished when he called me to report that my liver enzymes dropped dramatically and were no longer any sort of risk. My cholesterol and blood pressure were completely normal. I was no longer pre-diabetic or insulin-resistant. My doctor and I felt that all of this was due to the fact that I lost sixty lbs. He did advise me that too much weight-loss too quickly was not advisable but that the weight loss did seem to fix many of my issues. 

After all of this, the holidays came along and I kind of gave way on my extreme diet and moderately went back to enjoying foods that I did not have during my diet phase. This included sandwiches, burgers, pizza and many other things. I never gorged myself and always ate within moderation in an effort to not gain weight again. After adding these things back into my diet, I noticed that my BM issues re-occurred and I felt bloated, sluggish, and tired. I also noticed that my "psoriasis" returned on my scalp. I felt this was all very odd because I did not gain any of the weight back, so this did not make sense to me. 

I promise I am getting to my point... In March of 2018, my wife and I booked a cruise to Mexico and I decided that I would eat only meat, vegetables, and eggs again in an effort to shed a few more pounds for our trip. Within two months I lost another 25 lbs and was down to 245 lbs. I had tons of energy again, I felt great again, I slept great again, my "psoriasis" went away again, and I had regular BM's again. During our cruise, I ate whatever I wanted because "I was on vacation". When I returned, I again ate whatever I wanted within moderation. I realized that on the cruise I again had BM issues, felt bloated, sluggish, and tired. This continued when I got back from vacation. 

Okay, I now realize there is something else going on here and just maybe my problems are not completely related to my being overweight. This past week, I began researching online for causes of BM issues. Every website or forum that I visited said a million different things could cause BM issues and I began to feel hopeless. I then realized that one primary factor that all of the websites and forums did mention as a cause was Celiac Disease and gluten-intolerances. I initially thought "I can't have Celiac Disease, because I'm fat". But I then read that Celiac Disease also coincides with Dermatitis Herpetiformis. After reading what DH was, I instantly realized that my diagnosed "psoriasis" may in fact be DH. I instantly gave up all gluten and within two days, I feel much better already. My BM's are not normal yet but I can definitely feel a difference in my energy and I don't feel bloated.

I made an appointment to see my primary doctor on this upcoming Monday to discuss a possibility of Celiac Disease or a gluten-intolerance. Does anyone on here have any thoughts on my situation or experiences that could help guide me? This is all very new to me as of realizing this "anomaly" only three days ago, so I have very little experience and research as of yet. I am trying to become as informed as possible so I can have a very informed and detailed discussion with my doctor. I am certain that I will be referred to a gastroenterologist. I am sure this will involve more blood work looking for autoimmune markers and possibly a colonoscopy with a biopsy. I have read that I should not change to a gluten-free diet before these tests are done so that the tests will be accurate based on a gluten-induced diet, but do not want to go back to eating gluten again just to have testing done as it will undoubtedly make me feel terrible again. 

Also, this may be completely unrelated but I went to donate blood and plasma for a relative in the hospital last week and was told that I could donate blood but not plasma because when they tested my hemoglobin, my iron levels were too high. They said my iron was a 19.6 and the upper limit for donating plasma was a 18.0. I have read that Celiac Disease generally coincides with anemia due to the colon or small intestines inability to absorb enough minerals due to malabsorption because of villi damage. Obviously, this would mean that I am the opposite of anemia. Not sure if this means anything but wanted to put this out there also. 

Thanks in advance for any help and sorry that my story is so long. I just wanted to put all information regarding this issue out here before asking for advice. 

Edited July 29, 2018 by 34 year old male

[GFinDC]

Hmm,  I am starting to think you are 34 years old!

Welcome to the forum 34yom.

It does sound like you are having a negative reaction to eating gluten.  Yes, people with celiac sometimes gain weight instead of losing it.  It happens.

You are right about the testing requiring you to be on a gluten diet.  But you don't need to eat a lot of gluten.  1/2 slice of regular bread should be plenty to keep the antibodies hopping.  The recommended plan (gluten challenge) is to eat gluten for 12 weeks before the blood tests and 2 weeks before the endoscopy.  During the endoscopy of the small intestine, they take biopsy samples to check for celiac type damage.

For DH, they have a different test that a dermatologist can do.  They take a small skin biopsy from next to a lesion (not on it) and test it for IgA antibodies.  This is preferable testing for DH sufferers.

Sometimes people find eating the gluten at night before bed helps them sleep thru the worst symptoms.  Other people like to eat it at breakfast and have it somewhat better by bedtime.

Pepto Bismol and peppermint Altoids are good things to put in your medicine chest.  You may find that stopping all dairy relieves some symptoms.

It seems going gluten-free does relieve a lot of symptoms for you.  There has to be a reason for that.  Look for a dermatologist who knows how to test for celiac disease.  There may be a celiac support group near you who could recommend one.

Since celiac disease has a genetic component, it is possible your brother or parents etc. may have it or develop it at any time.

Edited July 29, 2018 by GFinDC