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Strange Question But I'm Curious...

Sbwife14

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Sbwife14 Rookie
Sbwife14
Posted

I'm new to gluten intolerance. Still adjusting. I've noticed my upper abdomen seems a bit misshapen... Kind of pokes out? I have no gallbladder. A patient who has celiac told me that because of the damage to her gut her stomach would never go back to the way it was.....seems odd but it bothers me. And times that I have an attack that area seems to be tender and feels very swollen and bloated. Does anyone have any insight on this? I apologize if there is a thread already... Thanks.

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1desperateladysaved Proficient
1desperateladysaved
Posted

My abdomen grew unusually large when I was sick.  I was mistaken for pregnant several times.  My tummy remained bloated until I removed all foods I did not tolerate.

w8in4dave Community Regular
w8in4dave
Posted

My gut is still big. Even tho I lost 40 lbs going gluten-free. I think it's because of trace amounts of Intolerance foods. I think I need to go on a gluten-free. Auto Immune diet.  <--- I think thats right. Because trace amounts of things do bother me. Corn, soy , Lactose , I know they are intolerances so I sometimes will let it slide if it's in aintolerance product but at the end of a ingredient list. I'll think well it's gluten free and only has a lil corn in it so ok yea I'll try it! Wrong Idea for me! My gut bloats up and I get gassy! But next morning i'm good! I do not have a gall bladder and my gut is a lil miss shaped but theres worse things. 

cyclinglady Grand Master
cyclinglady
Posted

I have the same issues. I am thin, but you can see the difference (just me). No worries. It is probably related to inflammation. Mine has improved greatly.

I see you did not get good medical support and did not get a proper diagnosis. I would suggest you read the newbie thread and learn about cross contamination.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

It takes a long time to heal for many (a few years), so be patient!

GottaSki Mentor
GottaSki
Posted

Mine swells and recedes along with flares and healthiest days...sometimes hours.

I do have many other intolerances and autoimmune issues, so you will likely have your tummy area much less swollen as you heal and your time gluten-free increases....it can take a long time, but it will happen.

Sbwife14 Rookie
Sbwife14
Posted
  • Author

Thanks guys. I did not have much medical support however today my PCP is ordering a gammit of tests and I am thankful. I don't think anyone else really notices but of course I think everybody notices. Finally I hope to get some definitive answers! When I have attacks my upper abdomen swells and sometimes gets hard....gassy...bad stomach pains....I will check out the newbie feed. I have a lot yet to learn!

BarryC Collaborator
BarryC
Posted

I am a guy with a huge bloated belly, looks like I am 9 months pregnant. What annoys me is that there is no fat and I actually have a sixpack. Everyone probably assumes I am a heavy drinker.

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Sbwife14 Rookie
Sbwife14
Posted
  • Author

I'm having a lot of trouble losing weight. I'm assuming it's because I'm new to this and my body hasn't had time to adjust and heal. When I do lose a few pounds my belly still looks swollen...it's discouraging so I'm wondering if it will always be that way?

GottaSki Mentor
GottaSki
Posted

I'm having a lot of trouble losing weight. I'm assuming it's because I'm new to this and my body hasn't had time to adjust and heal. When I do lose a few pounds my belly still looks swollen...it's discouraging so I'm wondering if it will always be that way?

Welcome SB!

It can take a while. How long ago were you diagnosed?

What age were you when diagnosed?

How long did you have symptoms before diagnosis?

Sorry for 20 questions..but details help folks here lend their knowledge.

Hang in there :)

Sbwife14 Rookie
Sbwife14
Posted
  • Author

Thanks, GottaSki, for the welcome! I don't have a firm diagnosis yet. I finally found a doctor that is as convinced as I am that I have a gluten intolerance and is working on scheduling a biopsy for me. My labs were negative. Here is my story....I had my gallbladder removed 2 years ago. About 6 months later I began having attacks....bloating, gas, excruciating pain that last as many as 7 days, easy bruising, foggy headed, tired all the time, migraines, low back pain and severe GERD...to the point of vomiting bile and constipation. These attacks would wake me up and keep me from sleeping and eating. I fasted my way thru it. These attacks happened over 7 months until I finally talked to my doctor. He did an upper GI AND EGD which showed GERD and gastritis. I followed anti reflux diet and taking two different prescribed reflux medicine sand GERD was no better. He then did a stomach scope and said GERD was worse and gastritis was worse and increased my reflux meds. It continued so I referred myself to a GI specialist who asked me about celiac. I hadn't heard of it. He ran labs and they were negative. I started looking into it on my own because he offered me no other advice...only GI cocktail which did nothing and I kept having attacks. I removed gluten entirely from my diet and within one week I couldn't believe the difference!! I "tested" gluten and ate 3 pieces of pizza and had the worst migraine ever!!! Continued eating sandwiches and other gluten foods and all of my symptoms worsened. I tried this several times to be sure. I changed PCP and told her my story and she def believes I have an intolerance. It's been hard for me so I've not been 100% at all....at all???and this past weekend I had a bad attack. I went to see her Monday and she placed me on gluten-free clear liquid diet only for a while, ordering ct abdomen, repeat EGD, and a colonoscopy with biopsy to check for celiac officially. Because my pain is around my pancreas and includes my low back she is checking this out as well. I am 42 years old. I never had GI issues until within the past 2 years. I've been dealing with this for that long but only made this discovery within the past 6 months. Until it actually saw the GI doc I had no idea what these attacks were. What was so disappointing to me was I saw a specialist he drew labs, said they were negative and offered nothing else...no trial, no thoughts of what else we could do to figure this out just GI cocktail and see you in three months and $168 of my dollars...I was very discouraged.

I logged onto this forum to also father knowledge and learn and cope with this. It's a huge change for me and a hard adjustment for me.

w8in4dave Community Regular
w8in4dave
Posted

I am a guy with a huge bloated belly, looks like I am 9 months pregnant. What annoys me is that there is no fat and I actually have a sixpack. Everyone probably assumes I am a heavy drinker.

I think it's called a wheat belly, and yes sometimes a beer belly. But really whats beer made with? Lol :) 

Sbwife14 Rookie
Sbwife14
Posted
  • Author

Very, very true! Hadn't really thought about it that way.

GottaSki Mentor
GottaSki
Posted

Give this a good read....

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Sbwife14 Rookie
Sbwife14
Posted
  • Author

Thanks. I often refer to the link you posted. Even though I am nit officially diagnosed my doctor and I are convinced I have an intolerance! She's trying to get everything lined up to hopefully have an officialt diagnosis. Question......do I have to consume gluten again I. Order to get positive results?? I'm a little unclear about that....

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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