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Member Since 12 Jun 2012
Offline Last Active Today, 11:03 AM

Posts I've Made

In Topic: Endoscopy Necessary?

Today, 08:11 AM

You don't need to see a GI specialist except if you want that endoscopy (I skipped that, and the Gastro, too).  Your GP should be able to order the follow up tests for you.  


Request the bone density scan.  It's a good thing to check.


Request nutrient levels are checked.  Ask for: D, A, B12, Ca, K, Mg, Zn, Cu, folate, ferritin.


Daibetes (T1) and thyroiditis  are the most common associated conditions  with celiac disease.  Your cancer risk was just slightly elevated while living undiagnosed.  Once you are healing, and your inflammation levels fall,  your risk of cancer will fall back to normal range.  It really is one of the less common complications of celiac disease.


Genetically, you are at a higher risk of developing other autoimmune diseases, but staying gluten-free will lower that risk as well.  Just be aware of future symptoms if they pop up, and have them looked into.  Try not to worry too much.  Most of us celiacs who have multiple autoimmune diseases developed them while we were living undiagnosed.  Living gluten-free will help you in the long run.  :)


Best wishes.

In Topic: Help!

Today, 08:01 AM

Welcome to the board.  :)


You may be asked, unfortunately,to go back on gluten for further testing at the GI's office.  You may want to call the office and find out if they'll want that.  It might be easier to go back on gluten sooner rather than later in your recovery.  Once you are feeling well, it will be tough to make yourself sick.


The recovery from celiac disease can be a slow up and down process.  Like you, I felt better at first (and lost about 15lbs - a good thing for me) but then I really slid backwards in some symptoms from months 3 to 6.  My main problem was fatigue, arthritis, sick feeling, and mouth sores.  I was convinced those symptoms must be lupus and not celiac disease because I had already been gluten-free for a few months, and it was quite a bad flare-up.  It eventually went away and the rheumy said it must still be celiac disease (so did the veterans  around here). I found it hard to believe but settled in to wait it all out (knowing celiac disease recovery can take a few years.  I have had some flare-ups since then but they are much less frequent, of shorter duration, and much less severe, so I think everybody was right - it was celiac disease.


Part of your symptoms could be that you are still recovering.  It really can take a couple of years to get better.  Nutrient levels usually take at LEAST 6 months before they start to improve.  Keep at it, and retest a couple of times a year.


About half of all celiacs can not handle milk when they are diagnosed.  The intestinal villi, which makes the lactase to digest lactose, are damaged still, so milk can cause a lot of stomach issues.  It's a good idea to drop milk for at least 6 months, and possibly for good.  Many regain the ability to eat milk but many do don, or just have the ability to handle things like cheese (which is very low in lactose anyways).


Other food sensitivities can be found among celiacs.  They don't cause the autoimmune reaction, but it can make you feel just as lousy as gluten.  Corn, soy, nightshades, eggs, guar or xantham gum, carageenan, or other unexpected foods (for me it is raw apples and pears) can make you feel bad minutes to a couple of days after eating it.  A food and symptoms journal may help you figure out the cause.... Sugar is a bad one too.


Celiac can co-occur with other diseases, the most common being diabetes (T1) and Hashimoto's hypothyroidism. I have Hashi's, so I can tell you that it could be the cause of some of your problems like dizziness (from low blood pressure), pain, fatigue, upset stomach, and low mood.  It doesn't usually cause weight loss (unless you've swung hyper) but going gluten-free can do that to those of us who needed to lose a few.  You might want to look into those two problems when you see your doctor.  Thyroid tests to request are TSH (should be near a 1), free T4 and free T3 (should be in the 50-75% range of the lab's normal range), and TPO Ab.


To your questions:

Yes low vit levels can make you feel bad, and they will be slow to improve.  Check D, B12, folate, A, K, Mg, Ca, Fe, Zn, Cu, and ferriin.


Talk to your doctor about dropping the iron.  If it is making you miserable, and not crucial to survival, you may need to drop it.


It could all be connected to gluten intolerance.  It can cause dementia to axatia, to headaches, to arthritis, to a stomach ache.  Celiac has 300+ symptoms. http://www.curecelia...SymptomList.pdf


Cleaning your prep surfaces should be enough; you'll need to wash it clean with soap and water.  Remember that you can NOT share a toaster, plastic colander, plastic or grooved wooden cooking utensils, or dented (teflon) pans or pots, butter, spreads, and dips.  Possible glutening causes are pet food, kisses from gluten eaters, shared toothbrush, lotions or hair products with gluten, vitamins or medications.


Best wishes.  I hope you get it figured out.

In Topic: Struggling...

Yesterday, 11:23 AM

Be careful with Amy's Pizza.  I think I remember reading somewhere that it is made in a facility that uses wheat.  I could be wrong - I don't buy Amy's.

In Topic: Help With Results?

Yesterday, 11:20 AM

That's what I read too; looks all negative. tTG normal range is 0-3 and AGA (anti-gliadin antibodies) range was 0-19.


The SGA tests are not very good, and few doctors use them any more.  Look on page 12 of this report: http://www.worldgast..._long_FINAL.pdf You can see the sensitivity can be as low as 17% for one AGA test, which means that 83% of celiacs would be missed.  It's specificity (perecntage of positives caused by celiac disease) is lower than the other tests too.


The deaminated gliadin peptides (DGP) tests have replaced them, and they are usually used for testing for gluten-free compliance.  Unfortunately, you have been gluten-free for 3 months so I would expect your AGA  (and DGP) tests to be negative.  Sometimes the tTG tests can linger high for a few months, but there is no way of knowing if you are one of those people bar doing a gluten challenge for 8-12 weeks, testing, and then going gluten-free for 3 months and testing again. 


The only way to know if you have celiac disease is to do the gluten challenge and retest withe the newer tests (DGP IgA and IgG, and tTG IgA and IgG). :(

In Topic: Help With Positive Blood Work & Negative Biopsy

Yesterday, 11:12 AM

No, is should not be any different for kids. One thing in a face of several others shouldn't exclude a DX. Has nothing do with being a kid or not.

...But doctors often do treat them differently.  It should all be the same, I agree, but it often isn't.