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Could This Be Celiac/gluten Intolerance? Please Help!

KLH123

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KLH123 Newbie
KLH123
Posted

Hi everyone!

I'm new to this forum, and I really don't use internet forums at all, but I've been so frustrated recently that I will do anything that could possibly help me, so I figured it was worth a shot.

I'm a 19 year old female w/ a very strange problem with my body and the more research I've done I'm wondering if it could be attributed to Celiac Disease or a Gluten Intolerance.

I've always been very tall and thin, but around 2007 my body started changing and getting bigger around my lower abdomen, right below the belly button, like a "pooch". At least 2007 was the first time I noticed it. That year I was having spine surgery to correct Kyphosis which causes an awful "Hunchback" posture, and my curve was pretty severe. I thought at the time my belly was due to such bad posture and would correct itself after surgery, but it didn't. I became more and more bothered by it because even though I was tall and thin everywhere else, I had this huge pot belly. In 2011 I ended up being diagnosed with Anorexia because in an attempt to try and get rid of the belly, I thought losing weight would help and developed the ED, but my belly is still as big as before. I lost about 30 lbs, and right now I'm about 5'10" and 105 lbs, which I know is very very underweight. (Btw I'm in treatment for my ED now and I'm getting help)

Even though I'm THAT underweight, my lower belly still looks massive, and everything else about me is so tiny. What's even weirder is that it doesn't feel "hard" like bloating, but it's soft and squishy, like fat, and I can actually pinch/grab a decent amount of it below my belly button. Even when I suck in as hard as I can it's still there, although smaller. What amazes me is that logically, you would think someone of my Height/Weight/BMI couldn't POSSIBLY have THIS MUCH Belly Fat, which is why it makes no sense. When I bend over it actually hangs down, it's so disgusting. Even worse, whenever I've tried to gain weight in recovery, it's all going there, and then I look even bigger and bigger in the middle but no change anywhere else on my body, so of course I panicked and lost the weight again. I actually have to buy my pants up to 2-3 sizes too big and wear baggier shirts to conceal it. No one believes me about this unless I show them my stomach, and then they're shocked thar someone as underweight as me could have such a flabby pot belly. It's all so horrible :,(

Over the holidays I ate a little more than I used to, which for me right now is like not even touching 1,200 calories a day, but again my stomach has expanded and even though I haven't gained weight, it's bigger and flabbier now than it was 2 weeks ago :,(

I have some other symptoms that I've heard could be attributed to Celiac, such as SEVERE depression/anxiety, acne cysts, severe fatigue (staying in bed for days on end for about 4 years now), MASSIVE sweet cravings, and some other stuff...I wanted to know if any of this that I've posted sounds like Celiac or a Gluten Intolerance or possibly something else? Does a "Celiac Belly" usually feel soft and squishy like extra fat or very hard (although mine does get firm if I'm extra bloated) and also sometimes the stomach aches I get can feel unbearable, especially in the last 2 weeks, but I've always had a very sensitive stomach.

Wow, I'm sorry this post is so long, I just really want some answers/insight on this. It's so frustrating because like all of my friends that weigh 20-30+ pounds more than me, even some that have been through children/pregnancies don't have this. It makes me feel so fat/gross and 10,000,000,000 times harder to recover from my Eating Disorder, which I want to do more than ANYTHING!!!!! Hopefully someone here can offer something helpful for me!!!!

Thank you so much!!!

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GretaJane Newbie
GretaJane
Posted

Have you looked into PCOS? That can make you gain belly fat there! I have friends who got really big bellies even though they were skinny and it turned out to be the polycystic overy syndrome. Other signs of that include extra body hair on belly (sometimes even dark upper lip hair or other facial hair).

You might have celiac, or non celiac gluten intolerance. That can cause depression, bellyaches, acne and bloating (it did for me). Never hurts to get tested!

I am proud of you for getting help with your ED!

Love your body and every little imperfection that is.

Keep up posted :)

KLH123 Newbie
KLH123
Posted
  • Author

I've thought about PCOS too, but I don't have any of the other symptoms of that such as dark/excessive hair growth, or menstrual irregularities (despite my Anorexia I still get periods) so yeah...although I'm willing to look into anything!

kareng Grand Master
kareng
Posted

I appreciate your honesty about the ED. Sorry but I have to ask this because you have an eating disorder and this is common in people with EDs - Does anyone else think your belly looks big?  what does your counselor think of this?

KLH123 Newbie
KLH123
Posted
  • Author

Yes, in fact my ED doctor wanted me to start out by having an X-Ray of my stomach to see if they could find abything that way, but I had that a while ago before Xmas and haven't heard anything back yet and I'm not supposed to go again to see her until the 20th. I'm just doing a little investigating on my own until then.

I remember one time I showed it to my aunt, and she was like, "Oh, that's easily fixed, just wear a girdle"...I mean, I know she was trying to help, but I don't see how someone of my height and weight would EVER need a girdle.

I seriously wish I was making this up or it was all in my head. I could post pictures but I mean that kind of makes me uncomfortable over the internet. I do recognize to some extent that I'm not seeing other parts of my body accuritely and use coping skills to push those thoughts put of my head, but I PROMISE you I am not on this!!!!!

kareng Grand Master
kareng
Posted

Yes, in fact my ED doctor wanted me to start out by having an X-Ray of my stomach to see if they could find abything that way, but I had that a while ago before Xmas and haven't heard anything back yet and I'm not supposed to go again to see her until the 20th. I'm just doing a little investigating on my own until then.

I remember one time I showed it to my aunt, and she was like, "Oh, that's easily fixed, just wear a girdle"...I mean, I know she was trying to help, but I don't see how someone of my height and weight would EVER need a girdle.

I seriously wish I was making this up or it was all in my head. I could post pictures but I mean that kind of makes me uncomfortable over the internet. I do recognize to some extent that I'm not seeing other parts of my body accuritely and use coping skills to push those thoughts put of my head, but I PROMISE you I am not on this!!!!!

 

 

OK.  Just checking.  As you probably know - Celiac disease/gluten free is one of the ways some people with EDs use to further limit food. We see it here sometimes.

 

When you go back to get the xray results ask about getting tested for Celiac disease.  I think if they saw anything really bad on the xray, they would call you right away.

KLH123 Newbie
KLH123
Posted
  • Author

Yeah, I have heard that. But even if I did go Gluten Free I'm seeing a nutritionist, so they would just use other ways to have me get my calories in. I'm not writing my own meal plans or anything!

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kareng Grand Master
kareng
Posted

Yeah, I have heard that. But even if I did go Gluten Free I'm seeing a nutritionist, so they would just use other ways to have me get my calories in. I'm not writing my own meal plans or anything!

 

 

You sound like you are working on it not just using it as an excuse.  Get tested before you go gluten free.

KLH123 Newbie
KLH123
Posted
  • Author

So I actually heard back from my Dr today on the X-Ray, and she did say that my colon is impacted/backed up/whatever with a large amount of stool and gave me something to drink to help try and flush my system a little bit.

Obviously I don't think that's the whole problem, but possibly a side effect of something else...

GFinDC Veteran
GFinDC
Posted

Hi KLH123.

 

Can you ask the doctor to do the celiac disease antibodies panel?  Constipation is one symptom that people with celiac disease get at times.  If you have celiac disease the problem won't go away permanently until you are on the gluten-free diet.  The antibodie testing is a simple blood draw to send to a lab.

 

They should also test your vitamins/minerals for any deficiencies.  A bone density scan is also a good idea.  Don't give up on getting a diagnosis.  If your doctor won't help with the testing find a different doctor who will test you.  You can look up celiac disease support groups in your area to ask them for doctor recommendations.  Talking to celiacs in your area may help.  There is also a doctors thread on this forum with info about doctors in various areas.

 

Celiac Support Groups

https://www.celiac.com/articles/227/1/A-List-of-Local-Celiac-Disease-Support-GroupsChapters/Page1.html
 

You can try searching the doctors section of the forum for your state or area to see if there are any good ones listed.

 

https://www.celiac.com/forums/forum/6-celiac-disease-doctors/

frieze Community Regular
frieze
Posted

have you been tested for diabetes?

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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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