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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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    • I have Celiac, Hashi's thyroid disease, Sjogren's Syndrome and Reynaud's Syndrome.  All have gotten better, inflammation wise, after 11 years gluten free.  I am very strict with my diet, never take chances if I feel the food is not really gluten free and limit the number of times I go out to eat.  I am not saying I never go out but it is normal for my husband and I to not see the inside of a restaurant for 3-4 months at a time and then I only eat at the places that have never glutened me.  I am lucky in that the state I live in has 3 restaurant chains that are run/owned by Celiac's, so they get it right every time. You have not been gluten free for very long, in reality.  It took me three years to completely rid myself of all symptoms related to the disease.  I was 46 at the time of diagnosis.  I know it is hard to accept that healing can take that long but you have to measure it differently.  Looking back, you should feel better than you did a year ago.  As time goes on, healing slowly takes place until you realize that certain problems have disappeared.  It is not as cut and dried as taking an antibiotic for an infection. http://www.drweil.com/drw/u/ART03424/Elevated-Creactive-Protein-CRP.html  Read this article on elevated c reactive protein. It is by Dr. Weil, who is a Harvard trained physician who chose to go the more natural route to healing people.  All his stuff is interesting.  Yes, your elevated level will most likely come down, as you heal better.  Pay attention to it but don't let it freak you out too much! 
    • Hi Calla, I think the safe answer is 12 weeks on gluten for a blood test.  I am pretty sure they say 2 weeks on gluten for the gut endoscopy.  But usually people/doctors don't want to  do an endoscopy before a positive blood test, so catch 22 there. There's a chance you still have active antibodies in your blood after 3 weeks off gluten.  But nobody can tell you for sure.  If you can get you doctor to test you now and in 9 more weeks if you are negative now, that might work.  If the doctor is willing to do 2 tests, that would be great. The best thing would have been to do all celiac disease testing before going gluten-free.  But sometimes it doesn't work out that way. The University of Chicago celiac center has an FAQ that answers some of your questions. http://www.cureceliacdisease.org/faq/i-dont-have-the-money-to-get-tested-for-celiac-disease-but-a-gluten-free-diet-makes-me-feel-better-is-it-okay-to-start-the-diet-without-being-diagnosed/ Welcome to the forum!  
    • Couldn't have said it better!  
    • If you are going for an endoscopy, then please ask for a celiac antibodies COMPLETE panel.  This will help you determine if you have been diet compliant (zapped by hidden sources of gluten or accidental cross contamination) and if your doctor misses the (possible) damaged areas during the procedure.    That way you can rule out celiac disease and THEN worry about the possibility of other AI issues.   I did this last summer.  I got really sick.  My GI thought SIBO right off the bat.  But I asked just to be tested for celiac disease.  Sure enough, I had elevated antibodies.  No need to test for SIBO or anything else at that point.  I just waited a few months for symptoms to subside.   Good Luck to you!  
    • That's good Megan, that you were tested.  Many people have the genes, but only some develop the disease.  Your doctor is right about celiac often appearing after some kind of physical stress or illness. The tricky thing about eliminating one food is that you body may be reacting to multiple foods.  So not getting better could mean you just eliminated one problem instead of 3. It's not unusual to have digestion issues for quite a while after going gluten-free.  Our guts are damaged and that damage has to heal.  But it can't heal until the immune system stops it's attack.  The immune system attack/reaction can keep going for weeks to months.  So it can be a slow recovery.  Often people report getting better and then getting worse and going back and forth on symptoms. What doesn't help is that our bacteria in our guts can get really screwed up by the disease process.  We can't properly digest things so there is more undigested food for bacteria to thrive on.  Avoiding sugars and carbs can help with that issue. Here are some starting the gluten-free diet tips for the first 6 months.  Some of these you have already taken care of: Get tested before starting the gluten-free diet.
      Get your vitamin/mineral levels tested also.
      Don't eat in restaurants
      Eat only whole foods not processed foods.
      Eat only food you cook yourself, think simple foods, not gourmet meals.
      Take probiotics.
      Take gluten-free vitamins.
      Take digestive enzymes.
      Avoid dairy if it causes symptoms.
      Avoid sugars and starchy foods. They can cause bloating.
      Avoid alcohol.
      Watch out for cross contamination. Helpful threads: FAQ Celiac com
      http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/ Newbie Info 101
      http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/
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