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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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    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
    • Spicely Organics has both cassia and true (Ceylon) Cinnamon and are certifed gluten free along with the rest of their spices, as to tea Republic of Tea has most of their products tested and certified gluten-free also. You can visit their sites or try Amazon.
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