Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Could I Have Celiac?ve An Answer?


mom-of-3

Recommended Posts

mom-of-3 Newbie

Well...this is my first time in here. I have been desperately trying to find the source to my chronic condition since I was born. My mother tells me that at birth, I didn't have a BM for 3 days. On the 3rd day it was so explosive it literally shot across the room and splattered on the wall. When she told the doctor he giggled and said that was normal for newborns.

All through out my childhood, I would go days sometimes up to 3 weeks without a BM. Then have about a week or two of exploding, gassy embarrassing trips to the bathroom. I have had chronic tummy pains. The different doctors sent me to all the different specialists. Taking samples anywhere they could. They told my mother I had 74 food allergies and listed them by rank of 1-3...3 being the worst. They also said I have IBS and I just had to deal with it. They tried to talk my mom into taking out my gallbladder but she wasn't convinced.

I was also the child who was always sick. Ear infections, pneumonia, colds, flues, etc. At 6 years of age I began gaining weight. I never had a bad eating problem. If anything, I was a picky eater because so many things hurt my tummy.

My father remarried and had a baby boy. My baby brother was born with Paloric Stenosis. They had to perform surgery right away. But he is perfectly healthy now (that I know of).

At age 10 they said I was Hypothyroid although the tests showed no signs of it. My mother and grandmother both have hypothyroid.

Going into my adulthood I have had to learn how to scope out any public area to try to any kind of private bathroom time or find clever ways to try to mask the explosions. I would actually not accept a job if the bathrooms were not private enough.

My pregnancies were all difficult and each baby wanted to come out early. I had a few miscarriages, too. Nobody knew why. Each pregnancy I got worse and worse. Then heavier and heavier. I didn't eat poorly, I thought. I have always had a healthy diet. But my 2nd pregnancy, I gained 100 pounds and had no clue as to why. I didn't eat any junk food. But I was also on bed rest.

The last 5 years I had stomach pain increase so badly there were days I could not get out of bed. I went to my GP after looking online at WebMD thinking I had gallstones and he said I had really bad heartburn. I told him I knew this was not a heartburn issue. He placed me on an antacid and said we should give this a try. Each day I felt horrible. I pushed through the pain and it just would not go away. Finally he sent me to a GI. My GI said the same thing and wanted me to try an antacid. About 2 months later he did an endoscopy. He didn't see anything other than some esophogitis. A couple months later he did a colonoscopy. Again, nothing. Finally a couple months later, I cried in his office telling him that at the age of 31 I should have a lot more energy, I shouldnot be as heavy as I am and I can't even play with my children because I am in so much pain. I reminded him that my pain was in the upper middle of my tummy and that seemed to confuse him. Like a cannon ball hit me there and would not go away.

He scheduled me to have an ultra sound at the gallbladder. Those test results came back as negative. (Keep in mind being 5'6 240 pounds, it wasn't easy I guess for them too see much.) I finally told him that the pain was so great I felt like I couldn't keep going. I have a huge tolerance for pain as I have been in pain all my life and learned to ignore a certain amount of pain. This was so bad for me to feel like giving up in life, this was something real. He finally had a CT scan.

3 weeks later his nurse called to tell me that the doctor had placed all my files in a pile and was about to go out of town for the holidays when she made him go through it (I was calling on a daily basis by this time.) I had gallstones. Exactly what I said 7 month prior. I had my gallbladder removed and felt a lot better. My surgeon showed me pictures of the gallbladder and it was completely white. He told me it was supposed to be pink, blue and purple. He never explained why mine was white.

He did tell me that with IBS, my symptoms would get worse after having the gallbladder removed. Worse I did get. I go about 8-12 times a day. Usually liquid form, yellow or if there is any solid waste, it is mush that sits on the top of the water or is so heavy it requires me to clean the bowl from its residue. I don't mind doing the bathroom thing. I figured out how to work from home. But I can't function properly as I am chronically exhausted, nauseous and I can't loose weight. I haven't started a work out plan because I have a very hard time leaving the house with all my tummy problems. Movement hurts, eating anything seems to hurt. Not eating anything hurts. I can't win.

One of my clients told me about Celiac and as I started to read about it, I thought that this could possibly be the answer I have been trying to find all my life. Now with the recession, I lost my health insurance and I really want to see if this sounds like something I should go ahead and get tested for. I will just pay for it out of pocket or try to get back my health insurance.

Can anybody help?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

Many of your symptoms could be connected to celiac, but then celiac has something like 200 possible symptoms.Heavy people can indeed have celiac but inability to gain weight is more common. And as you know some of your problems might be the result of the extra weight.

Bottom line is that there' no way we can diagnose you. You can go for the blood tests, which will cost you but not nearly as much as the endoscopy would. Or you can even decide on your own to go gluten-free and see if that helps.

richard

KristaleeJane Contributor

Hello,

I think that if you have these symptoms that you described than yes you should have been tested a long time ago, even if you don't have celiac disease than you can at least rule it out. It can often be mistakin for IBS, in fact that is what I was diagnosed with early in my twenties, and put on antiacid type medication also, my stomach got so big and I got so sick i kept thinking I was pregnant. Finally my doctor did the test, I had never heard of celiac at the time, and it was positive. Once I started the diet my heartburn immediatly went away, my stomach shrank and I began to have normal bowel movements, it took about a year for the energy to come back, so if you are celiac remember it takes time for your body to recover. I hope that you can find what is making you sick..........and Good Luck.

mom-of-3 Newbie
Hello,

I think that if you have these symptoms that you described than yes you should have been tested a long time ago, even if you don't have celiac disease than you can at least rule it out. It can often be mistakin for IBS, in fact that is what I was diagnosed with early in my twenties, and put on antiacid type medication also, my stomach got so big and I got so sick i kept thinking I was pregnant. Finally my doctor did the test, I had never heard of celiac at the time, and it was positive. Once I started the diet my heartburn immediatly went away, my stomach shrank and I began to have normal bowel movements, it took about a year for the energy to come back, so if you are celiac remember it takes time for your body to recover. I hope that you can find what is making you sick..........and Good Luck.

Thank you for letting me know that. I would have given up if I didn't see any results in a couple of months. They did try to place me on IBS OTC meds and I just stopped having BM and would get very sick. So I stopped taking them. I will go get tested. I see that someone recommended a doctor here in NC. I will have to give them a call this week. At 32, I am desperate to have some quality of life with my family.

ang1e0251 Contributor

Many of your symptoms could be connected to celiac, but then celiac has something like 200 possible symptoms.Heavy people can indeed have celiac but inability to gain weight is more common. And as you know some of your problems might be the result of the extra weight.

There is about a 34% of persons with celiac disease who are overweight as opposed to underweight. I would say that is probably why it's so hard for us to be considered for a celiac disease diagnosis. It's true that she could possible have some problems because of weight but read her story. She was having serious symptoms long before weight became an issue.

Your advice for her to be tested is excellant. Also I wonder if during your endoscopy, your GI took biopsies? You can find out by asking for a copy of all your tests results from that dr.

If you can't afford the testing you can go ahead and try the diet and go from there. It sounds like it could have benefits for you.

txplowgirl Enthusiast

Hi There,

You sound a lot like me. Have always been in pain sice I can remember. No BM's for 3 to 4 weeks at a time. I can remember when I was 7 my mother and grandmother trying to give me an enema. Me fighting all the way.

I have been 200 lbs since I was 14 and I am 5 ft. 2 in. Never able to lose weight until I got pregnant then I lost most of it then gained it back after he was born 2 months premature. Then I had 7 miscarriages in 5 years. I have always had chronic anemia. Dr's always told me I was being overly dramatic and put me on anti depressants.

Last year I was dx'd with fibromyalgia and dr put me on several medications which didn't work, just seemed to make everything worse. That's when I started researching after learning a lot of people with fibro have problems with what they eat. That's what led me to gluten.

Again, like you I had no health ins so I researched it for about 4 months then went gluten free. I will NEVER go back to eating gluten again. I started this journey to lose the pain and fatigue not even worrying about the weight. That is a side benefit I didn't expect. I have lost 30 lbs so far in the last 5 months.

In my opinion I wouldn't wait, I would go gluten free now. Later on down the raod when you are in better shape then get tested if you want. Again just my opinion. Oh, also alot of us have found that we are vit b-12, magnesium and vit d deficient.

I hope you get to feeling better soon.

If you would like some help just send me an email @ txplowgirl@yahoo.com. I'll help you all I can.

  • 2 weeks later...
Sparty Newbie
Well...this is my first time in here. I have been desperately trying to find the source to my chronic condition since I was born. My mother tells me that at birth, I didn't have a BM for 3 days. On the 3rd day it was so explosive it literally shot across the room and splattered on the wall. When she told the doctor he giggled and said that was normal for newborns.

All through out my childhood, I would go days sometimes up to 3 weeks without a BM. Then have about a week or two of exploding, gassy embarrassing trips to the bathroom. I have had chronic tummy pains. The different doctors sent me to all the different specialists. Taking samples anywhere they could. They told my mother I had 74 food allergies and listed them by rank of 1-3...3 being the worst. They also said I have IBS and I just had to deal with it. They tried to talk my mom into taking out my gallbladder but she wasn't convinced.

I was also the child who was always sick. Ear infections, pneumonia, colds, flues, etc. At 6 years of age I began gaining weight. I never had a bad eating problem. If anything, I was a picky eater because so many things hurt my tummy.

My father remarried and had a baby boy. My baby brother was born with Paloric Stenosis. They had to perform surgery right away. But he is perfectly healthy now (that I know of).

At age 10 they said I was Hypothyroid although the tests showed no signs of it. My mother and grandmother both have hypothyroid.

Going into my adulthood I have had to learn how to scope out any public area to try to any kind of private bathroom time or find clever ways to try to mask the explosions. I would actually not accept a job if the bathrooms were not private enough.

My pregnancies were all difficult and each baby wanted to come out early. I had a few miscarriages, too. Nobody knew why. Each pregnancy I got worse and worse. Then heavier and heavier. I didn't eat poorly, I thought. I have always had a healthy diet. But my 2nd pregnancy, I gained 100 pounds and had no clue as to why. I didn't eat any junk food. But I was also on bed rest.

The last 5 years I had stomach pain increase so badly there were days I could not get out of bed. I went to my GP after looking online at WebMD thinking I had gallstones and he said I had really bad heartburn. I told him I knew this was not a heartburn issue. He placed me on an antacid and said we should give this a try. Each day I felt horrible. I pushed through the pain and it just would not go away. Finally he sent me to a GI. My GI said the same thing and wanted me to try an antacid. About 2 months later he did an endoscopy. He didn't see anything other than some esophogitis. A couple months later he did a colonoscopy. Again, nothing. Finally a couple months later, I cried in his office telling him that at the age of 31 I should have a lot more energy, I shouldnot be as heavy as I am and I can't even play with my children because I am in so much pain. I reminded him that my pain was in the upper middle of my tummy and that seemed to confuse him. Like a cannon ball hit me there and would not go away.

He scheduled me to have an ultra sound at the gallbladder. Those test results came back as negative. (Keep in mind being 5'6 240 pounds, it wasn't easy I guess for them too see much.) I finally told him that the pain was so great I felt like I couldn't keep going. I have a huge tolerance for pain as I have been in pain all my life and learned to ignore a certain amount of pain. This was so bad for me to feel like giving up in life, this was something real. He finally had a CT scan.

3 weeks later his nurse called to tell me that the doctor had placed all my files in a pile and was about to go out of town for the holidays when she made him go through it (I was calling on a daily basis by this time.) I had gallstones. Exactly what I said 7 month prior. I had my gallbladder removed and felt a lot better. My surgeon showed me pictures of the gallbladder and it was completely white. He told me it was supposed to be pink, blue and purple. He never explained why mine was white.

He did tell me that with IBS, my symptoms would get worse after having the gallbladder removed. Worse I did get. I go about 8-12 times a day. Usually liquid form, yellow or if there is any solid waste, it is mush that sits on the top of the water or is so heavy it requires me to clean the bowl from its residue. I don't mind doing the bathroom thing. I figured out how to work from home. But I can't function properly as I am chronically exhausted, nauseous and I can't loose weight. I haven't started a work out plan because I have a very hard time leaving the house with all my tummy problems. Movement hurts, eating anything seems to hurt. Not eating anything hurts. I can't win.

One of my clients told me about Celiac and as I started to read about it, I thought that this could possibly be the answer I have been trying to find all my life. Now with the recession, I lost my health insurance and I really want to see if this sounds like something I should go ahead and get tested for. I will just pay for it out of pocket or try to get back my health insurance.

Can anybody help?

Well, I like you have gained weight with this Celiac disease. I gained 25 pounds in one year, even though most people lose weight. I have not had your BM issues but then again symptoms really differ between people. I would get tested, it's just a blood test, before you try going gluten free. Otherwise the test will not be accurate.

I also may find another dr which is more versed in celiac. If the blood test comes back negative then you still have the option to try to go gluten free. then you will really know! You need answers.....move to another dr till you find one that will help you!

Good Luck!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



dultimate1 Newbie

Wow, you sound like me at the point I am right now. I am on my way to my surgeons office for the results of an EGD I had done a little over a week ago, so I don't have a lot of time to post much of a reply to you, but i will bookmark this page and try to get with you sometime tomorrow here through the forums. I have many more symptoms than you have explained, but the main general ones are identical and the way I feel is the same...wondering if I will live much longer. I look forward to chatting with you some more about this very soon...In the meantime, I hope you feel better ...at least a little bit.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,394
    • Most Online (within 30 mins)
      7,748

    Shannon S.
    Newest Member
    Shannon S.
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • James47
      So as some of you already know I was 47 turning 48 before my diagnosis so a lot and a lot of internal damage. I no longer obviously drink beer unless gluten-free variants of it but does anyone else really struggle when just drink any sorts of alcohol now. I'm really thinking going tea total and avoiding it completely 
    • NavyMom
      Hi CathiJean, Wipe those tears my friend.  Finding out that you have celiac just gave you the cheat code on how to start feeling better!  It may feel like a loss right now, but honestly within 6 months you will start feeling better.  Within a year you will look back and wonder how in the world did I survive feeling like that for what feels like a lifetime?  You mentioned 15 years, that's about how long I have been really ill as well.  I had told every doctor I saw that I kept getting sick, infections, hair loss, joint pain, etc. and nobody would listen to me until I turned 45.  I went in for a colonoscopy and the doc says how often do you have bowel movements and I said usually between 10-15 times a day.  Suddenly I had someone actually listen to me and the testing began.  What I can tell you is use this forum, talk to peers, read everything you can about how to gluten-free your kitchen, encourage your family to participate in your journey (trust me they love you enough to make the effort), how to order food in restaurants, and how to avoid cross contamination.  Accept that you will make mistakes and allow yourself grace as you implement your new normal and have a clear understanding that going gluten free will begin healing your body in ways that you will not even begin to understand until you actually do it.  So, have faith that the nutrient deficiencies that you are probably experiencing right now can be corrected and you are on a bright path to feeling SO much better.  Think about how incredible your mom journey is about to become as you begin to feel better!!  Your kids are going to be amazed at your energy levels, ability to play and go do stuff...you are leveling up knowing that you have Celiac.  Knowing gives you power my friend, harness it and have gratitude that it was discovered...even if the docs missed it - you know now and keep moving forward.  You got this!! 
    • trents
      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
×
×
  • Create New...