Pre Diagnosis

[aghasue]

Hi there. I’m new to this group and looking for some answers so would be grateful for any comments. 
I have suspected that I may have Celiac for some years now. 
initially I had a severe rash on my shins which was unbearably itchy. At the time I was unaware of dermatitis herpetiformis so never considered celiac as a diagnosis. I attended the GP but after trying numerous medications without any success, and no diagnosis, I continued to have flare ups of this for a number of years. It eventually subsided but following a routine appointment for fatigue and low mood my GP did blood tests and established iron and folate deficiency. This was treated but after short periods of improvement it has recurred several times. I was referred for endoscopy and colonoscopy about 4 years ago and these did not flag up any issues. At this time a biopsy was taken for celiac but it was clear. (That said, prior to the procedure I was on a restricted diet and would not have had much gluten intake). Blood tests have not identified celiac either. I have not had many gastrointestinal issues aside from soft unstructured and fatty stools and an urgency to go to the toilet. I have now come out in a clustered blister type rash on my back, shoulders and bottom. It is symmetrical on both sides but is not itchy at all. The GP has been unable to diagnose this and has made a dermatologist referral for me. Blood tests identified folate and iron deficiency again. Other symptoms include visual disturbance and brain fog with lack of concentration and extreme fatigue. I had attributed many of these symptoms to menopause but just wondered if It is possible that I could have celiac disease as HRT has not alleviated my symptoms. How difficult is it to diagnose? And what are my next options?

[trents]

Celiac disease is not difficult to diagnose but you must be eating meaningful amounts of gluten prior to any kind of testing. Here is what the Mayo Clinic guidelines are:

For the serum antibody tests: The daily consumption of gluten in the amount equivalent to at least 2 slices of wheat bread for 6-8 weeks leading up to the blood draw.

For the endoscopy/biopsy: The daily consumption of gluten in the amount equivalent to at least 2 slices of wheat bread for at least 2 weeks prior to the procedure.

If you cut back on gluten prior to testing, the inflammation in the small bowel lining begins to subside. The inflammation is what produces the antibodies that the serum test is designed to detect. Likewise, if you cut back on gluten prior to the endoscopy/biopsy it may allow healing of the villi lining the small bowel such that damage doesn't show up in the microscopic lab analysis of the samples taken. Also, many physicians do not do a thorough job during the scoping and don't take enough samples from enough areas. Damage can be patchy and easily missed. We recommend several samples be taken from both the duodenum and the duodenum bulb.

When seeking the antibody tests, as for total serum IGA, ttG-IGA and Deamidated gliadin peptide (DGP IgA and IgG).

You certainly have a lot of symptoms that could point to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). NCGS is 10x more common than celiac disease and shares many of the same symptoms. A dx of NCGS requires first ruling out celiac disease. The antidote is the same for both: total avoidance of gluten for life.

 

[aghasue]

43 minutes ago, trents said:

Celiac disease is not difficult to diagnose but you must be eating meaningful amounts of gluten prior to any kind of testing. Here is what the Mayo Clinic guidelines are:

For the serum antibody tests: The daily consumption of gluten in the amount equivalent to at least 2 slices of wheat bread for 6-8 weeks leading up to the blood draw.

For the endoscopy/biopsy: The daily consumption of gluten in the amount equivalent to at least 2 slices of wheat bread for at least 2 weeks prior to the procedure.

If you cut back on gluten prior to testing, the inflammation in the small bowel lining begins to subside. The inflammation is what produces the antibodies that the serum test is designed to detect. Likewise, if you cut back on gluten prior to the endoscopy/biopsy it may allow healing of the villi lining the small bowel such that damage doesn't show up in the microscopic lab analysis of the samples taken. Also, many physicians do not do a thorough job during the scoping and don't take enough samples from enough areas. Damage can be patchy and easily missed. We recommend several samples be taken from both the duodenum and the duodenum bulb.

When seeking the antibody tests, as for total serum IGA, ttG-IGA and Deamidated gliadin peptide (DGP IgA and IgG).

You certainly have a lot of symptoms that could point to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). NCGS is 10x more common than celiac disease and shares many of the same symptoms. A dx of NCGS requires first ruling out celiac disease. The antidote is the same for both: total avoidance of gluten for life.

 

Thank you so much for your comprehensive reply. It’s a great help.

[trents]

By the way, aghasue, welcome to the forum!

[RMJ]

Since you have a referral to a dermatologist, I would ask him to do a skin biopsy for dermatitis herpetiformis. 

[aghasue]

8 minutes ago, RMJ said:

Since you have a referral to a dermatologist, I would ask him to do a skin biopsy for dermatitis herpetiformis. 

Hi RMJ - I will suggest this to him. However it is my understanding that dermatitis herpetiformis is always extremely itchy and the rash I have at the moment is not. Can you have dermatitis herpetiformis without the itchiness?

[RMJ]

1 minute ago, aghasue said:

Hi RMJ - I will suggest this to him. However it is my understanding that dermatitis herpetiformis is always extremely itchy and the rash I have at the moment is not. Can you have dermatitis herpetiformis without the itchiness?

I don’t know, but there is a DH forum as part of celiac.com - you might ask there. 

DH forum