Importance of Diagnosis?

[Valerie2021]

Hi all! Since I became pregnant with my first in 2011, I've been experiencing really frustratingly itchy patches on my buttocks, elbows, knees, as well as painful sores on my hands. After years of asking my doctor, using various steroid creams, taking allergy medication, etc. I've also done the celiac blood work (which came out negative). I have since (as of last summer) self-diagnosed myself with DH as I get the same blistery papules and when I avoid gluten it goes away. The relief is amazing!

I live in a fairly remote area where there is no dermatologist, the closest one is 7 hours away. Before I even consider a dermatologist I'd need a referral from my doctor who doesn't always get to see my rash in action, and who doesn't take my concerns seriously. I've learned to live with this, I seem to know the triggers, so is getting a diagnosis really that important? My doc said if I feel better off gluten, to just avoid it!

I suffer from depression/anxiety, severe seasonal allergies, have been gaining weight steady since taking my depression meds, genetically disposed to a thyroid condition (just waiting for it to happen).. have any of you seen improvements in this area with a diagnosis? I'm not on a strict gluten-free diet as I have young kids and it's just so exhausting to have to accommodate everyone and pay so much money for special foods. 

Thanks for reading

[trents]

Welcome to the forum, Valerie!

Your inconsistency in avoiding gluten is preventing your healing. If you have celiac disease or non celiac gluten sensitivity the key is not cutting down on gluten but avoiding it altogether. At the least, in preparing gluten-containing foods to please the rest of your family you are getting small amounts of gluten ingested through breathing flour dust and possibly handling it. And it sounds like you are acquiescing to the temptation or the convenience of eating what they eat, at least some times.

You are not going to want to hear this but what really needs to happen in your household is for everyone to commit to eating gluten free!  And you cannot possibly be consistent in avoiding gluten if your are preparing gluten containing foods for the rest of the family. Gluten free eating does not have to be expensive if you focus on naturally free gluten foods as opposed to buying a lot of gluten free prepared foods. So instead of getting starch from wheat products, use rice and potatoes. Instead of flour gravy, use corn starch. For baked goods you can buy all purpose gluten free flour in bulk online from Amazon or Bob's Red Mill, etc. 

If you had reduced your gluten consumption before getting tested it may have sabotaged the results. Pretest gluten challenge guidelines are to be eating the amount of gluten found in two slices of wheat bread or the equivalent for at least 6-8 weeks. Many physicians are ignorant of that or simply neglect to inform their patients of it.

[Scott Adams]

I believe you're doctor is correct, and a formal diagnosis may not be necessary (especially if you live in such a remote area). If you've already seen a connection with your rashes and gluten, and they go away when you are gluten-free, then staying gluten-free should be your primary goal. This can be difficult and this article may be helpful:

 

[Valerie2021]

Thanks to you both trent and scott! i'm starting again from scratch, making my health a priority. How do you suggest i navigate questions about autoimmune diseases, etc? Would I consider myself celiac? I'll be avoiding gluten but I'm hesitant to "label" myself. In the end I suppose it doesn't really matter though!

[trents]

"I've also done the celiac blood work (which came out negative). I have since (as of last summer) self-diagnosed myself with DH as I get the same blistery papules and when I avoid gluten it goes away. The relief is amazing!"

Valerie,

Celiac disease cannot manifest itself in either of two ways or both. DH is one of the two classic forms of celiac disease, the other being small bowel villi blunting. But many celiacs will not experience both. Your description of the rash you get, with the blisters, definitely sounds like DH as opposed to some other skin disease. And when it clears up in response to periods of eating gluten free, that really pretty much seals the diagnosis in my mind. I'm not sure what testing you had done for celiac disease. There is a battery of blood antibody tests that can be done and then there is the endoscopy/biopsy of the small bowel lining. Which did you have done? The fact that you are sometimes eating gluten free may have sabotaged you tests or they may have been negative because your celiac disease manifests itself in DH rather than bowel lining damage. Regardless of whether celiac disease manifests itself as DH or small bowel lining damage, it is an autoimmune condition. 

Also, your thyroid issues, depression, etc. all fit the mold of health issues that often accompany celiac disease.

Since for a variety of reasons it doesn't seem practical to press on for an official diagnosis, you must settle on this in your own mind. Until you do, your family will not take you seriously in this matter. I see no reason for "shying away" from labeling yourself as a celiac. Until you can accept this as a reality, you will be fighting inconsistency in your eating habits and healing will elude you.

[Valerie2021]

Thank you all so much for your comments. I've been off gluten since this post and am feeling great   I'm going to keep watch on my other symptoms and see how they fare over time. 

[Valerie2021]

Another update: After requesting bloodwork and starting a gluten challenge, I only lasted three days of unbearable reflux. I had a few weeks to wait for my bloodwork appointment in which i casually had small things containing wheat or gluten. My bloodwork came back flagged with IgA levels of 52, so it appears I do have celiac. 

I've also flagged positive for a number of other autoimmune diseases as well  and I'm awaiting my appointment with a rheumatologist and a endoscopy. 

Thanks for the encouragement to get tested again, I thought for sure my levels wouldn't register in the bloodwork.

[trents]

It's good to get some answers, isn't it.