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Where Do I Go From Here?
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I'm new to this forum and to celiac. I have 5 children. Last month I had my youngest son (4) tested for celiac through blood tests (positive) and endoscopy (positive). This week I had confirmation that one of my other kids (who's 10) tested positive through same testing. I am working on re-testing my third child (8) because his blood tests showed abnormally low numbers for celiac. According to his gastroenterologist, this could also be a sign of celiac. I'm slowly wrapping my head around being a gluten-free family and we have eliminated gluten from our home (except for the one being re-tested). My real concern is for my oldest daughter. She is almost 19 and has been suffering from health problems for over 2 years now. She has had joint problems from the time she hit puberty. She has had 3 knee surgeries to recreate ligaments that were stretched too far to hold her knees in place. She then started complaining that she didn't feel good all the time. Then she started throwing up frequently and having diarrhea/constipation often. I took her to the dr. and he basically said it was all in her head. After she lost nearly 30 lbs and missed weeks of school due to illness, I took her to a new dr. who did lots of tests and found that she had a severe case of mono. Months later, she still wasn't any better. She could hardly eat anything and was constantly miserable. We found that her gall bladder wasn't functioning and she had it removed. She has always had exzema but after the gall bladder was removed it got severe. She was often sent home from school because the nurse thought it looked contageous. She went off to college and still struggled. She would randomly pass out and has still been vomiting frequently (she doesn't have an eating disorder). She complains of a sharp pain in her side every time she eats. She has since moved back home in attempts to get healthy again. I was anxious to have her tested for celiac when we found that my sons have it. She has tried gluten elimination and said that she feels much better and her skin has started to heal from it. She was tested for celiac and results came back negative. Her dr. just says she doesn't have it. I'm fine with her just going gluten free for life. I'm confident she will start to heal and feel much better, but with all of the issues she's had, it would help her so much to have an official diagnosis. She was so upset when the results came back negative because she wants so much to know for sure that if she does make this change it will be a permanent help to her. Are there any recommendations from any of you who may have gone through similiar symptoms and testing?

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Your story  is like  so many others....  its  hard  to understand the  medical field....&  as they are  getting  better  they still don't  have all the  knowledge  yet  ........Your  daughter  at  the  very least  sounds  like  she is  gluten  intolerant/sensitive...if  she  truly needs confirmation  then  she  should  consume  eating  gluten & lots  of  it  & be  tested  again  after  several months  of  consuming gluten. Honestly, I  couldn't  do  that  because  after going  gluten-free  I  felt  so good   it  didn't matter  if  a  doctor  put his  seal of  approval  ... Just  to  set  the record  straight  I was  dx'd  in  several  ways......but  many  feel  so  good  they  just  don't  care to  subject  their  bodies  to gluten  ever  again...

With  that  many  in the family  being  gluten-free  I  agree  that  a  gluten-free household  would  be  ideal...&  make it  easier  for  the  cook!

And  in my neck of the  woods  its  hard to get  a  dx's , most  docs  want  to  take  out the gallbladder  first......then  within  a couple  of  years  after  that  they  say  oh  you may have  celiac or  gluten  sensitive!!!!  DUH!!!!!

So  I  would  say to your  daughter  she  knows  how  she  feels  with  wheat &  without  wheat... Make  a  choice  &  live  your  life... If  it  were  a  younger  school age  child  I  think  a  confirmation  is  necessary  to  get through the public  school  system... many colleges  now  offer  gluten-free foods so that  shouldn't  be  a  big  problem if  she  chooses  a  college that  has  the  gluten-free  section....

And  I  think you answered  your  own  question""  she  feels  better  after going  gluten-free, skin is  healing"

 

blessings

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Do you have the specific tests ran and the numbers behind them? Sometimes a "negative" could be headed in the direction of a positive. Some people can give up gluten because they feel better and others want to know for sure. For me I think I needed to know it wasn't optional. I had a blood test as well as an endoscopy. I believe the blood test is enough however. The test I received is an IGA/TTG. I don't know the interpretation of the numbers but I believe it is on this site. With so much family history it is likely the culprit whether it shows that way or not. Best wishes to you and your family.

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I had a lot of the same symptoms (gallbladder, tummy troubles, skin issues). Was she gluten free when she was tested? That might be why it came back like that.

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Oh, feel for you.  The real gold mine test for celiac /gluten problems is a positive response to diet and it sounds like your daughter had that.   Welcome to the gluten free club!  Thanks for supporting your family members; I know, you have to you're the Mom. 

 

I had eczema and mono.  I never seemed to recover from the mono-until now.  I can't help thinking that mono is something you usually get when you are rundown.  Gluten can run ya down.

 

Get that family well,

I hope your test results will be helpful and motivating.

 

D

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Ugh. I hate hearing that teens are having problems! I still feel like I'm not far from those years myself (but I have a case of the 90s were 10 years ago). 
 
Have you done the genetic testing yet? Even if she is negative for Celiac now, with the DQ2 and DQ8 genes it makes it much more likely for her to develop it down the road. 
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    • hey! Wondering if I can get some good info/help from you guys! I just signed up for this website couple weeks ago. Whenever I would Google things this was always the first to pop up and I always found info on things I googled. I am pretty new to the gluten free thing. I had a hernia surgery back in Jan and after that I kept throwing up after eating, the DR. told me it was probably acid reflex caused from surgery but all the meds I tried nothing helped. I went back and was told to cut gluten out. I have been doing so since. When I first started I felt like I had it under control and didn't throw up for 3 weeks, now I find it happening more often. I do buy gluten-free things and read labels to the best I can. My frustration comes from not knowing what its from. How do you know if its from the day before or what you just ate? I hate not knowing. Especially when I haven't had gluten (or so I think) I have been keeping a journal but I just find it so hard. I get this feeling in my stomach and can feel it in my throat. Sometimes I puke once sometimes 5 times! Yesterday for lunch I made an omlet with chicken mushrooms and feta cheese. I threw up almost 20 min after. I have also tried the no dairy thing and it doesn't seem to make a difference so I don't think dairy is an issue as well.
    • I have been on a gluten-free diet for exactly one-year. During that time, I have had no stomach issues or problems when I inadvertently ingested gluten. The other day, I had GI discomfort (no vomiting or diarrhea) and my blood pressure spiked t0 200/98 (normally 119/75). As my GI discomfort subsided, my pressure crept back to normal. This took about 16-hours. I know that I ingested something with gluten, which I had thought was gluten-free.  It never bothered me before. Should I expect that the longer I'm gluten-free, the more susceptible I will be to having a pronounced reaction to inadvertent gluten exposure? Has anyone else had similar experiences with blood pressure spikes?
    • If this is helpful: My local public library had a copy of Breaking the Vicious Cycle by Elaine Gottschall.  There is a Facebook group, I believe it is easily found by searching SCD Diet, and it's a closed group.  If you go directly to the official website of Breaking the Vicious Cycle, there's lots of information for free available, including the basics about the intro diet and beyond.  I would go to the original source of this diet rather than go to other groups/books who have perhaps veered away from Elaine Gottschall's fundamentals. Best wishes to you!
    • AdrienJ, thank you so much! I dream of traveling more one day. I have spondylitis too. I'm so glad that a gluten free and casein free diet is helping you feel your best!
    • Hi Lisa, I completely understand why you didn't do a biopsy on your daughter.  I went through the appendix thing myself...not fun!  I was diagnosed with just bloodwork and no biopsy, but did have the full panel.  I would go back to your PCP and ask for a full panel to include TTG, EMA and DGP tests.  Since she was already willing to test you, I'm sure she would be willing to order these.  Good luck!
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