Do I have celiac disease??

[Keeley]

Hi I am looking for some advice if anybody could help I would be truly grateful. A few years back I was tested for celiac disease, the bloods came back as positive and the doctor said I am 98% likely to be celiac and needed a biopsy to confirm. After the biopsy I went on a gluten free diet and all my symptoms subsided after 6 months on the gluten free diet my doctor told me my biopsy came back negative! 5 years down the line and 5 miscarriages later they have now done the blood test again and are asking for a gastric consultant for advice. The letter has my results on there but I don’t know how to read them as it doesn’t say positive or negative. I will write it as it reads does anybody know what the normal range is? Thankyou in advance.

tTG IgA Antibody (serum) 46.6 

kU/L 0-14.9

[tessa25]

Is the kU/L 0-14.9  on the same line? If so maybe your normal range is 0 - 14.9.

[Keeley]

9 hours ago, tessa25 said:

Is the kU/L 0-14.9  on the same line? If so maybe your normal range is 0 - 14.9.

Thankyou so much for replying yes the kU/L is on the same line. So does that mean mine is 46.6 and normal should be 0-14.9?

Sorry for all the questions I am new to all this I have requested the doctor phone me to go through it but not sure how long I will be waiting.

[tessa25]

3 hours ago, Keeley said:

Thankyou so much for replying yes the kU/L is on the same line. So does that mean mine is 46.6 and normal should be 0-14.9?

Sorry for all the questions I am new to all this I have requested the doctor phone me to go through it but not sure how long I will be waiting.

Yes, that would be a positive for celiac. Like your doctor said the next step  would be to get an endoscopy/biopsies. You need to keep eating gluten until the testing is done or you can get a false negative.

Even if the endoscopy came out negative somehow, I'd go gluten-free after the testing is done.

Once you go gluten-free your blood test numbers will come down.

 

CYA: not a doc

[frieze]

I am SOOOO angry for you, at this moment!  you should have stayed on the diet, but why would you when you were told it was neg!  5 miscarriages, 5!  have to stop before the language gets me banned.

[cyclinglady]

I am so sorry for all your losses!  

There are so many reasons why the original biopsy could have been negative.  1) damaged areas missed (the small intestine is the area size of a tennis court or more), 2) not enough biopsies taken, 3) biopsies not taken in the recommended areas, 4) your damage was located beyond the reach of scope, or 5) you could have been just starting to cause damage.  A smart GI would have had you trial the diet and then recheck your blood tests and look for symptom resolution (which did work).  If he/she were smart, they would have not just reordered the TTG but added the DGP and EMA.  They could have also ordered a genetic test just to help solidify the diagnosis (no genes no celiac for the most part).  

Again, I am so sorry.  You can only move forward!  Good things are bound to happen now!  ?

 

[Keeley]

7 hours ago, frieze said:

I am SOOOO angry for you, at this moment!  you should have stayed on the diet, but why would you when you were told it was neg!  5 miscarriages, 5!  have to stop before the language gets me banned.

I know I have mixed emotions at the minute all the signs where there ? I have one little boy who was a low birth weight despite being term plus 16days. I have suffered with fatigue, bloating, stomach cramp and other symptoms for many years the doctors just have me on repeat prescription for omeprazole! I am angry at the heartache I have gone through if I would of been correctly diagnosed in the first place I wouldn’t of had to lose 5 babies to find out I actually am celiac ?

[Keeley]

7 hours ago, cyclinglady said:

I am so sorry for all your losses!  

There are so many reasons why the original biopsy could have been negative.  1) damaged areas missed (the small intestine is the area size of a tennis court or more), 2) not enough biopsies taken, 3) biopsies not taken in the recommended areas, 4) your damage was located beyond the reach of scope, or 5) you could have been just starting to cause damage.  A smart GI would have had you trial the diet and then recheck your blood tests and look for symptom resolution (which did work).  If he/she were smart, they would have not just reordered the TTG but added the DGP and EMA.  They could have also ordered a genetic test just to help solidify the diagnosis (no genes no celiac for the most part).  

Again, I am so sorry.  You can only move forward!  Good things are bound to happen now!  ?

 

Thankyou so much for your response it makes a lot of sense and things are just clicking into place. I am hoping that they will just diagnose with this being my second positive blood test and given my history! I wish I had done more research in the past I just trusted the doctors advice. The more I am reading the more angry I am at myself, I should of just stuck with gluten free diet and it would of saved me a lot of heartache. I guess the only way is up from now on, I will be pain free and much healthier!

I will continue to eat gluten incase they decide to repeat the biopsy but regardless of the doctors advice I will be going gluten free ☺️