How can I be overweight with Celiac?

[Emily W]

I was recently worked up for Celiac disease due to a laundry list of autoimmune inflammatory processes with no explanation and my blood panel is highly indicative for celiac disease, although I am still waiting to see an Gastro doc. 

 

One of my symptoms is persistent weight gain that I couldn't get under control-- I was killing myself trying everything under the sun and the scale kept going up for years and years. I've been gluten free for a week (no other changes) and I've lost 5 pounds. 

 

I saw on several peer reviewed studies that 39% of celiac disease people are overweight at the time of their diagnosis but I can't find the pathophysiology on why that is. Clearly I am one of those 39%. Can anyone share their knowledge?

[lisas11lisa]

I also gained weight b4 diagnosis..some of us have..then I had to have my gallbladder removed..goes along with Celiac Disease..and I still cannot loose weight ..diagnosed 6 years ago..My Best advice to u..if u haven't already..Do the AIP Protocol..find out what your body reacts too..and give it up..It's so hard with everything we have to give up..but necessary to feel better..GOODLUCK and RESEARCH ALL THE TIME!

[Ennis-TX]

For it me used to be a combo deal, I was constipated for days over a week constantly....that packs up, and the rotting fermenting food can cause a inflammatory effect and water retention in addition. You also have the low energy reserves so your might not be as active as others. Then you have the fact your body is actually starving for certain nutrients and going into a fat store horde mode all the time. Everyone is a bit different but these are why I think I used to be overweight in high school.  Going into and getting out of college my symptoms changed drastically and I just kept loosing weight and being sick with various symptoms and thought I was dying before getting diagnosed.

[mommida]

Have you seen pictures of undernourished alcoholics (beer belly), starving children, end stage chronic illness?  All have large protruding bellies.  The body does try and hold on to all nutrients and tries to protect vital internal organs in the trunk of the body.  It is a misleading visual for starvation, inflammation, constipation in a person who can be retaining fluids.  All of that can make a person look pretty puffy. 

 

I think every Celiac should also be having their thyroid monitored for auto immune thyroid disease too.  Graves disease is an over active thyroid and Hashimoto's Thyroiditis can start out flip-flopping between over active to underactive until it finally destroys the thyroid function entirely -lifetime of thyroid medication is needed.  Hashimoto's likes to hide itself by making the neck area very puffy and swollen.

 

[cyclinglady]

Wait!  You should have been told NOT to go gluten free until all celiac testing has been completed.  Your GI may want to run additional blood tests.   Typically, the next step (biopsies obtained via an endoscopy) require you to be on a gluten diet.  If you go gluten free, you will stop producing antibodies.  Some people heal fast and some slow.  What if you do the endoscopy and it is negative, yet your blood tests showed elevated antibodies for celiac disease?   You will be in diagnostic Limboland.  If you want a diagnosis for to improve your health, start eating gluten.  If you are intested in weight loss, cancel the appointment with the GI.  I do not mean to be mean....but it sounds like you are taking the time to research celiac disease.  Understand all the testing requirements before making changes in your lifestyle.  I am sorry if your doctor did not tell you this, but the sad truth is that many front-line doctors are clueless.  Too bad they do not google thing before ordering tests (I get that they can not know everything!).  

Why are you overweight and I was not?  Everyone presents differently making celiac disease even more difficult to diagnose.  I am not overweight and I have Hashimoto’s.  Go figure.  Again, all present differently!  (Ennis had a good explanation and Mommida was dead on on getting a thyroid screening (including thyroid antibodies).  

[knitty kitty]

Emily, 

I agree with Cycling Lady's advice to continue eating gluten until all tests are completed.  Many Celiacs report horrible reactions to the reintroduction of gluten into their diets after several weeks or months of being gluten free.  They endure these Gluten Challenges for diagnostic purposes after they went gluten free on their own or on poor advice from doctors who aren't knowledgeable about Celiac Disease.  Get all the tests done, get a definite diagnosis, then go gluten free.  At least you've had a glimpse of what a gluten free diet will do for yourself. 

Be sure you discuss vitamin and mineral deficiencies with your doctor and nutritionist.  Celiac Disease causes malabsorption which results in malnutrition.  Newly diagnosed Celiacs are often low in many vitamins and minerals.  

Since your intestines are damaged by Celiac Disease, they have trouble absorbing nutrients, especially fat soluble vitamins A and D.  Low levels of vitamin D has been linked to obesity and thyroid disfunction.  Low vitamin A is linked to vision problems like night blindness and skin problems.  

The B vitamins are water soluble and so are easily lost when one has diarrhea or constipation. The B vitamins need to be replenished every day.  Until you heal, you may need to use supplements to ensure you can absorb enough vitamins and minerals.

B vitamins are essential to energy production.  If your body doesn't have enough of certain B vitamins, the carbohydrates can't be "burned" for energy and so are stored as fat.  

Niacin, Vitamin B3, is needed for intestinal integrity.  Without Niacin, the intestines can't keep water on the inside of the digestive tract.  The intestinal tissues bloat resulting in that distended beer belly in alcoholics and starving children.  And Celiacs.  

Deficiencies in iron, copper, zinc, calcium, and magnesium are prevalent in the newly diagnosed and can cause anemia, muscle weakness, and other problems. 

 Gee, sounds scary, so catch nutritional deficiencies early! 

I was morbidly obese.  My vitamin D level was 6.  Accepted "Normal" range varies, generally 40 or higher, but people who live in the tropics or who get plentiful sunshine, usually have levels between 80 and 120.  My weight slid off as I got my vitamin D level to the 80's.  I was deficient in all the B vitamins, iron, zinc, calcium, and vitamins A and C.  I took supplements and still do today  though I try to get most nutrients in whole foods.  

I went on the AIP (AutoImmune Paleo Protocol) diet and had wonderful results.  I also incorporated a low histamine diet that really helped, too.  While healing, I cut out dairy, all grains, all processed foods, nightshade vegetables, and legumes. 

Here's some articles about vitamins

Open Original Shared Link

Open Original Shared Link

I hope this helps!  Please keep us informed on your diagnosis and progress! 

 

 

[Posterboy]

On 2/13/2018 at 2:25 AM, knitty kitty said:

B vitamins are essential to energy production.  If your body doesn't have enough of certain B vitamins, the carbohydrates can't be "burned" for energy and so are stored as fat.  

Emily W,

Knitty Kitty hit the nail on the head.  I think.

See this Livestrong article that covers it well.

Open Original Shared Link

B-Vitamins support your metabolism and because a celiac is a malabsorption syndrome/disease at it's heart you often have trouble with getting enough B-Vitamins from your food.

Here is a good article link that explains how B-Vitamins helps Celiac's.

https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html

I too wasn't "skinny" when I was diagnosed either but begin loosing weight after I began absorbing my nutrients again.

Think starving children they almost always have bloated belly especially if there is a famine or war.

Here is a good list of nutritional diseases

Open Original Shared Link

search for images of kwashiorkor especially prominent when good protein sources are not readily available like a famine.

I hope this is helpful.

***** this is not medical advice but I have learned for most things "there is a Vitamin/Mineral" for that.

(though we don't always know what it is sometimes)

And why this is not 100% true in all cases.

It is true in many more cases than it is not and we don't recognize modern vitamin deficiencies today.

here is a great example.

They sell "restasis eye drops" for dry eyes.

But if the Vitamin D council is correct. . . you should take Vitamin D.

Open Original Shared Link

and I did!

I no longer rub my eyes constantly because my dry eyes are better.

I could go down the list but Knitty Kitty has given you a great overview.

I hope this is helpful.

I think health is "Alimentry" of or pertaining to your gut/GI.

If your GI system is not healthy . . . the rest of your body will not be healthy soon because that is where absorption occurs.

I actually think it is "Time for a Vitamin Reformation" today.

But I am afraid doctor's are too busy studying medicine's today that they don't often have any time left to study Vitamins/basic nutrition these days.

That is for Nutritionists???? Ironic isn't it.

Again I hope this is helpful.

2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

posterboy by the grace of God,

 

 

[Emily W]

Thank you guys for all your explanation, this all makes a lot of sense. I gained 40 pounds in 4 years and have tried EVERYTHING short of completely starving myself to make it stop. I will be interested to see what fixing these nutritional deficits will do for me. 

As for continuing to eat gluten until I see my Gastro, I have decided to start taking care of myself now. The gastro's in town don't have any availability until end of April and I can't continue to eat my own personal form of poison for the 3% chance that exists that I don't have celiac disease (based on all my lab results). If he deems it necessary I will go from there. But I have had many years of suffering from this disease and I just can't keep doing that to myself, you know?

Thank you all for your concern and recommendations, I am so appreciative. We will see where this crazy journey takes me!

[Sienna2013]

Sharing my experience: both of my kids (K1, girl, then 11, and K2, boy, then 10) were diagnosed within a month of each other last year, both of them with off the charts TTG IGA levels. 

Kid1 had been putting on weight - went from average range to 15-20 overweight - and had a bizarrely insatiable appetite in the 6-9 mo leading up to diagnosis, among a bunch of other difficult behavioral issues. Like, she would have 3 or 4 full plates of something (more than I can eat, and I'm quite tall with a very healthy appetite) every night at dinner, and pitch a fit when I cut her off because she said she still felt hungry. (Cue parental speech from me about how something must not be right, because her stomach cannot possibly still be hungry, so let's wait 20 min, etc. ...) Left unchecked, she would've eaten herself into seriously overweight territory because of what celiac disease was doing to her appetite, gut, and brain; my guess is that it was a combination of malabsorption driving increased appetite, and pain misreporting itself as hunger, but I really don't know.

As of today, a year later, her antibodies are down to only 4x normal and she is starting to slim down naturally without any huge effort or changes other than eating healthy and starting to do more activities than she used to (because she's starting to feel better and has some energy now). She occasionally worries about it (middle school ...), and I reassure her that it is nothing to worry about - it'll take care of itself as she continues to grow and to heal. 

At the same time, K2 had been getting skinnier and skinnier as he went through what we thought was a series of stomach flus, with diarrhea and vomiting. Nope, turned out to be celiac! He has slowly been putting weight back on and has gone from stringbean to healthy slim. He's due to get his labs drawn soon; I'm guessing he's at close to normal but not normal yet, as he still is low-ish energy and complains of aches and pains. 

TL:DR - There is a lot of variation, and celiac disease can cause overweight as well as underweight, even in the same household.