Advice Needed

[Rachelp11 0]

Hello,

I need some advice.  I have had a positive blood test for celiac.  
My doctor referred me to a GI specialist but my appointment is not until  May (I live in Canada, so it is covered by OHIP but the wait times are ridiculous). 
I started the process of getting tested because of a rash on my elbows, knees, and bum.  
I have attached pictures of my knees and elbows (excluded my bum).   
My blood test results are also included.
I am very certain that I am celiac.  
My question is, with the blood work and rash, would you wait until May to have an endoscopy done to confirm diagnosis or go ahead and cut gluten from your diet to alleviate symptoms? 
My rash is so itchy, it keeps me up at night.  I have an 8 month old son who also keeps me up at night. 
Before I realized Celiac was a possibility, I thought I had brain cancer because of the brain fog/dizziness/memory loss.  Once  I googled my rash and other symptoms, and had the blood work done, it all makes sense with celiac.

 What would you do??

[GFinDC 695]

Welcome to the forum!

You may have DH (dermatitis herpetiformis).  DH is a skin rash only people with celiac disease get.  They test for it by taking a small skin sample from next to a lesion and testing it for antibodies.  If you have DH, you have celiac disease.

 

[Victoria1234 98]

See if you can get in with a dermatologist sooner! 

[cyclinglady 1,155]

Your blood test is a positive.  Normally, that means you would be recommended to see a GI for intestinal  biopsies via endoscopy for final confirmation.  But you have a very long wait time!  You can choose to go gluten free now and consider a two week gluten challenge prior to your endoscopy.  If this seems unacceptable, you are still eating gluten, and your rash is flaring, you might be able to get a skin biopsy.  The dermatologist needs to be celiac savvy as there is a special method of finding the antibodies in your skin.  You can read through the DH section of the forum to find out exactly how a skin biopsy is done and you can share it with a Dermatologist.  You can read about tips too for keeping your sanity.  I do not have DH (I am a hive girl), but I get the itching and the need for relief.

Keep reading and learning.  Only you can make the decision that is right for you and your family.  Keep an eye on your baby as celiac disease is genetic.  Sometimes it is silent (no symptoms).  Siblings and your parents should be screened (TTG IgA (antibodies) test).  That might help your diagnosis.  Some GP/PCP doctors will diagnose based on blood test results and a resolution of symptoms on a gluten-free diet with a reduction of antibodies from your initial test.  Not to mention your other out-of-range markers  found on your blood tests like very low ferritin, etc.  These can be a very sure sign of malnutrition (inability to absorb nutrients). These numbers should improve on a gluten free diet.   

 

Edited October 1, 2017 by cyclinglady

[Jmg 299]

 Hello and welcome

The main benefit of the endoscopy as I see it is establishing the level of damage, if any, and thus setting a baseline to test response to the diet. That and you need it for the diagnosis. There are benefits to a diagnosis, not so much in treatment terms (there isn't one) but in the ancillary support, nutrition levels, perhaps making it easier for families to get tested etc. I think the main one however is that it helps people to make the life changes required to strictly follow the gluten free diet.

The last point is important, the diet is sometimes difficult and restrictive, at least in social situations. If you were uncertain I'd suggest you phone the endoscopy ward on a weekly basis asking for cancellations, if they know you can come in on short notice it could be you could be seen far sooner than next May? 

This stood out however from your post: 

On 10/1/2017 at 6:42 AM, Rachelp11 said:

I am very certain that I am celiac.

I knew from quite early on that gluten was a problem for me. I made the same mistake many others did in cutting gluten from my diet before testing. I did go back and do the challenge, felt awful and tested negative. It didn't make any difference, the specialist told me to avoid gluten based on my response. I didn't need his reassurance, my body was telling me this in no uncertain terms. 

I personally think May is too long to feel better given your DH symptoms. If I were you I would self diagnose, live gluten free and book an appointment with your doctor / dermatologist to monitor your response to the diet and get them to note it in your medical records. Do all the good advice in this forums newbie thread.  Ask nicely if your doc will test nutrient levels. Keep your own diary/photos so you can establish as much as possible any relation between diet change and symptoms. 

The challenge period for the endoscopy is less as CyclingLady says above. You can afford to take a decision in March/April if you want to do a gluten challenge. Although if the scope is clear then good, don't let a formal negative test put you back on gluten if the diet is working for you. Although if you've responded well on the diet beforehand you may choose to forgo further testing in any case. In the end the objective is your health and well being and don't lose sight of that. 

Best of luck