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Hi there, I am new to this and have a couple questions, my 14 yr old daughter has tested positive for celiacs via blood test, her TTG IgA is 234.7( apparently 15 or less is normal?) endomysial antibodies is also positive and IgA 1.4 g/L 

does this confirm celiacs? Is there a chance she may not have it? She has been referred for a biopsy but that could be months away. What are the chances the biopsy could be negative?

really feeling for my girl at the moment,

thanks

 

 

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58 minutes ago, Jilly1 said:

Hi there, I am new to this and have a couple questions, my 14 yr old daughter has tested positive for celiacs via blood test, her TTG IgA is 234.7( apparently 15 or less is normal?) endomysial antibodies is also positive and IgA 1.4 g/L 

does this confirm celiacs? Is there a chance she may not have it? She has been referred for a biopsy but that could be months away. What are the chances the biopsy could be negative?

really feeling for my girl at the moment,

thanks

 

 

I am not a doctor.  I think you know exactly what the test results mean, but you are 8ndenial which is normal.   I think there is a strong indication that she has celiac disease.  For sure?  No.  A firm diagnosis requires an endoscopy to obtain intestinal biopsies.  This is STILL the gold standard in diagnosing celiac disease.  Now some people lack health insurance, must wait up to year to get an endoscopy, or may be deathly ill and therefore can not have the endoscopy.  In those cases, a doctor might trial the gluten-free diet after getting a gene test.  

See if there are any cancellations.  That is easy to do.  

There could be a chance her biopsies might be negative because her small intestine is vast (size of tennis court) and the GI might not take the appropriate number of biopsies.  I think it is worth checking it out because it provides a good benchmark for follow-up testing.

I was positive on my biopsies (Marsh Stage IIIB).  Five years later, I was getting lots of heartburn and indigestion.  My follow-up biopsies revealed a healed small intestine, but I did have chronic gastritis which is not affected by gluten or related to celiac disease.  So, a totally separate issue.  I was thankful to have been able to refer back to my earlier biopsies (no gastritis then).  

I have a teen.  I get your despair!  But this is one disease that can be controlled without any medications.  How lucky is that?  Soon, she will feel better and you will all adapt.  It will get easier, I promise!  I wish my celiac disease was caught earlier!   I might have been able to prevent damage (e.g. osteoporosis).  

I hope this helps!  

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Thank you for your reply, in denial... probably yes! I understand that celiacs is completely controllable however the diet change etc is huge, I guess it will be something that will become second nature eventually. I asked about the test results as nothing was explained to me and I am still waiting to see her paediatrician, it’s a bit frustrating as we do not fully understand the results and cannot discuss them until we get another appointment. 

She suffers badly from an overactive bladder and constipation which is why the test was done. 

I wish you all the best ?

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1 hour ago, Jilly1 said:

Thank you for your reply, in denial... probably yes! I understand that celiacs is completely controllable however the diet change etc is huge, I guess it will be something that will become second nature eventually. I asked about the test results as nothing was explained to me and I am still waiting to see her paediatrician, it’s a bit frustrating as we do not fully understand the results and cannot discuss them until we get another appointment. 

She suffers badly from an overactive bladder and constipation which is why the test was done. 

I wish you all the best ?

I wish you luck and that you get the endoscope soon, keep on the gluten diet for now til you get the testing done.

The constipation is normally caused by a magnesium deficiency. Natural Vitality Calm can help with this, start off in small doses 1/4 tsp a day and slowly up (a scale and by the gram is better) til you get hte full 2 tsp (4g) space the dose out if you need to. You might have to bring the dose up a tiny bit more til loose stools are present then you dose back down a bit. This is referred to dosing to tolerance.

Read the newbie 101 section for now, and I have a comprehensive list of gluten free foods, starting off with simple meals from fresh home cooked whole foods like chili, soups, omelettes etc is best at first to keep it simple and help heal. She will probably have to remove dairy and oats for a month or so also then try them again later.

https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/
https://www.celiac.com/gluten-free/topic/120402-gluten-free-food-alternative-list-2018-q1/

 

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