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New To This With A Few Questions...

jamiecasabellameeks

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jamiecasabellameeks Apprentice
jamiecasabellameeks
Posted

Okay, so here is my story in a nutshell...I have had stomach "issues" and GERD for as long as I can remember.  Honestly, I have just gotten used to it...always told I probably had IBS.  However, a few months ago I went to my doctor because I was having severe joint/muscle pain and fatigue.  I had no idea what was causing it.  I thought arthritis!  Anyway, he ran x-rays. Everything was fine...except for some spinal arthritis.  He asked me if I had ever been tested for Sprue...Well, I didn't even know what it was.  After blood work, I tested positive for the Anti-reticulin antibodies and Vitamin D deficiency but nothing else.  I had a biopsy two days ago.  The GI doc told me my small intestine looked inflamed and that I should know the biopsy results soon.  I started gluten-free that day PRAYING I could start to feel better soon.  I'm nervous that my biopsy will be negative and I still won't know the cause of everything.  Now, the joint pain is not that severe.  I am suffering from fatigue, dizziness, and nausea.  I just don't want to move.  I don't want to even look at food because I feel like it's the culprit.  HELP! I feel so lost.  I live in a city where no one seems to even understand Celiac...all very skeptical.  

 

I also might add that I have had 3 babies in less than 4 years and have been under A LOT of work stress lately...thinking this could have been a trigger.

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shadowicewolf Proficient
shadowicewolf
Posted

That can easily be a trigger.

 

Well, since you've had the biopsy done, I'd think it would be safe to say to try the gluten free diet.

 

There is quite a bit of info here for ya:

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

nvsmom Community Regular
nvsmom
Posted

Welcome to the board.  :)

 

The most common blood tests for celiac are:

  • ttg IgA and ttg IgG
  • EMA IgA (sometimes EMA IgG)
  • DGP IgA and DGP IgG
  • total serum IgA (and sometimes IgG)
  • AGA IgA and AGA IgG (older tests not used as much now)

The ARA test your doctor used is not used much anymore, and as I don't know much about it I can't comment on it. If you haven't had the other blood tests done, you might want to resume eating gluten and get them done soon. I only recommend them because some people like/need more than one positive test before they are willing to accept the gluten-free diet for life, and there is a chance your biopsy will be negative if the doctors miss the damaged parts.

 

If you do think you might want further testing/proof in the future, you should probably do it now. Many celiacs find that their reactions to gluten can become more severe after being gluten-free so if you resume eating gluten in the future, it could be a bad experience.

 

Read lots of books and look around the website and you'll be educated in celiac disease in no time. If you feel worse for a few weeks after going gluten-free, hang in there. Some of us go through a withdrawl and tend to feel worse before we get better.

 

Best wishes to you.  :)

GFinDC Veteran
GFinDC
Posted

Hi Jamie,

 

The other part of celiac testing besides the endoscopy is blood anitbodie tests.  So, if you haven't had those done yet I'd suggest waiting until those are done before starting the gluten-free diet.  If you stop eating gluten before all the testing is done it can negatively affect the test results.

 

One other thing that is common enough with celiac disease is thyroid problems.  You could ask your doctor to test your thyroid levels and also thyroid antibodies.  They are both just blood draws for the test samples, so easy stuff.

 

Both celiac and thyroid can cause fatigue.  The damage that celiac causes to the intestine prevents proper absorption of nutrients (vitamin etc), and that can cause fatigue.  After you go gluten-free, the immune system slowly winds down it's attack on the gut and it can heal.  Then you can begin absorbing nutrients better and begin to feel better too.  That process of healing can take a while tho, and it pays to be patient with yourself.  Often the process of healing seems to be kind of back and forth, better and worse etc.

 

The good news is that celiac is one disease that you can control without drugs or surgery.  It takes some concentrated effort at first to learn the gotchas and how to avoid gluten in your diet.  But it gets to be your normal diet after a while.

 

Starting out it is really helpful to switch to a whole foods diet of meals that you cook from scratch yourself.  Avoid all processed foods for a few months until you get things settled down some in your gut.  Processed foods are things like boxes of cereal, pre-made things like bread and cookies, or frozen meals etc.   If you stick to foods from the perimeter of the grocery store that is usually where they keep the whole foods.  Fruits, meats, nuts and veggies are great for you.

 

Many of us need to stop all dairy for a while until the gut has healed up some.  But after that many can start eating dairy again.

 

Welcome to the forum and feel free to ask questions. :)

 

jamiecasabellameeks Apprentice
jamiecasabellameeks
Posted
  • Author

Welcome to the board.  :)

 

The most common blood tests for celiac are:

  • ttg IgA and ttg IgG
  • EMA IgA (sometimes EMA IgG)
  • DGP IgA and DGP IgG
  • total serum IgA (and sometimes IgG)
  • AGA IgA and AGA IgG (older tests not used as much now)

The ARA test your doctor used is not used much anymore, and as I don't know much about it I can't comment on it. If you haven't had the other blood tests done, you might want to resume eating gluten and get them done soon. I only recommend them because some people like/need more than one positive test before they are willing to accept the gluten-free diet for life, and there is a chance your biopsy will be negative if the doctors miss the damaged parts.

 

If you do think you might want further testing/proof in the future, you should probably do it now. Many celiacs find that their reactions to gluten can become more severe after being gluten-free so if you resume eating gluten in the future, it could be a bad experience.

 

Read lots of books and look around the website and you'll be educated in celiac disease in no time. If you feel worse for a few weeks after going gluten-free, hang in there. Some of us go through a withdrawl and tend to feel worse before we get better.

 

Best wishes to you.  :)

THANK YOU FOR YOUR COMMENT! I'm PRETTY sure he completed all of the other blood work but it was negative.  He did the ARA in addition to the other.  So, I guess:  Is it still likely that I have Celiac if some blood work was negative but some was positive? What other condition could cause my small intestine to be inflamed (since I at least know that much from EGD)?

 

I went to the dietician yesterday, as well, but I'll be honest...I feel like I have learned more online that from my doctors.  It just amazes me how LITTLE doctors know about this...

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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