This topic contains 3 replies, has 4 voices, and was last updated by Ariella Wells Ariella6 9 years, 1 month ago.

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  • #7862
    Regan Hodina
    rhodina
    Member

    I have had celiac spru for 3 years.  Unfortunately, I know very little about it and have received very little information from my doctor except to go on a “gf diet.”  I am now an army wife that receives “free” but rather poor medical care.  I am looking to have children in about a year and I know that it is extremely important that my physical health be excellant before I conceive.  I could really use some tips from someone who has a somewhat similar experience!

    I self-diagnosed celiac spru when I was 22.  I developed a rash on my stomach that no doctor could explain.  After hearing that my great grandmother had it I went on a gf diet.  The rash disapeared suprisingly quickly. 

    When I researched celiac I learned that most people experienced severe stomach pain or digestive issues when they eat gluten.  That is not the case for me.  The only symptoms that I experience are a slight rash which grows worse if I ingest a lot of gluten, memory loss, or fogginess as I've heard it described, and hair loss.  Recently I also found out that I now have a hyper-thyroid.  I can deal with a rash, but the memory and hair loss are really inconvenient and down right scary.  The last two symptoms have also gotten worse over the past three years.

    I don't know where to start to get my health on track.  When I was in college I only lessoned my gluten intake.  This past year I've done better, but by no means do I have a perfect diet.  Now that I'm considering children I'm going to pay close attention to it, but what else can I do?  Are there certain vitamins or foods that I should be eating more of?  What questions should I be asking my doctor as I will not get any assistance unless I specify exactly what I want/need.  Are there tests to track where I'm at?  For people who have experienced memory loss and/or hair loss, have you been able to regain what you lost? Do you feel like you're functioning at pre-gluten-intolerance levels? 

    Thank you for any help you might offer!!

     

    #8739
    marciacharlene
    marciacharlene
    Participant

    Hi.  What a blessing for you that you found this site.  It is such a great resource and Dr. Osborne can give you guidance when he has time to respond, but I wanted to jump in when I read your concern about the memory loss.  I never experienced hair loss, but memory loss I can relate to.  I've only been gluten free for several months, so hopefully other folks with a longer history will respond, but I would really encourage you to go completely grain free.  It involves a lot of label-reading and planning, but it can be done.  And the results will encourage you to keep doing it.  A lot of my issues were gut-related and have greatly improved.  Re the memory, I was really feeling ashamed of how bad it got.  I can't tell you that it is completely healed, but I can say that I see an improvement.  And I plan to be kind to myself and patient while I wait for the rest to return.  I have the peace of knowing that what I am putting into my body are the things that it needs and no longer anything that causes me harm.  Hope that helps- you be blessed as you figure this out,   Marcia

    #8744
    Kate Osborne
    Peter Osborne
    Keymaster

    You need to be 100% gluten free!  Removing most of the gluten in your diet is not enough.  If you need confirmation on your diagnosis to commit to the diet you should get genetically tested.

     

    Additionally, Spectracell labs offers a vitamin and mineral test to help assess supplementation needs.  Nutritional deficiencies are common for those with gluten sensitivity and they can contribute to many of your symptoms.

     

    Gluten's primary target is the nervous system.  It is extremely common for people to experience brain fog, memory problems, clouded thinking etc.  Likewise, it is common for people to recover on a gluten free diet.  Give yourself at least 6 months.

     

    You may want to consider joining Gluten Free Society's membership area where you can access more than 8 hours worth of video tutorials on going gluten free. 

     

    Hang in there.  Staying consistent with the diet is the key to regaining your health.

    Welcome to the forumSmile

    #8778
    Ariella Wells
    Ariella6
    Member

    how r u doing? have been able to get the gluten out?  You will feel so much better if you do! have you checked out the recipe section for recipes or ideas?  I have 4 in my house that are gluten intolerant.  one that was diagnosed with celiacs.  another with gout issues and he has different type of restricted diet, 1 with IBS and 1 normal.  believe me trying to feed everybody in our house is crazy! let us know if you need any help or ideas!

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