My quest for an official diagnosis

[weebl]

I'm about 4 weeks into my gluten challenge, and just visited the lab. I am certain I have DH, and so I am remaining on gluten until I see my doctor next week, to go over the blood test results. I have also requested that he perform a biopsy at my appointment, and an appropriate length of time was booked for me, with the notation that it was specifically for that purpose.

I have two different trains of thoughts related to this quest. One is focused on the steps required to get to an official diagnosis, the other on my experience through this.

First, on the steps that I've made it through, and what's left. I realize that the length of time I've been on the gluten challenge has been on the short side, but this is not something I really want to be doing longer than I need to.

What I understand is that on the shorter side of things, the results of a blood test are more likely to come back negative. My rationale in accepting this has been the following. I am certain that blood testing done several years ago when this possibility was first explored, then quickly dismissed was that the tests came back negative. I was not gluten free at that time, as that was simply not something I considered doing until early this fall. Secondly, I am reading that DH will likely cause the blood tests to come back negative anyway. From the blood testing perspective, I think there is strong reason to believe that no matter what I do for how long, that is likely how my blood tests will pan out. I need to move forward with the diagnosis, and if I have a strong suspicion anyway, might as well "fast forward" through this stage.

I am also certain that if the antibodies were to show up in my blood, they are there in full force now anyway. Not long into the gluten challenge, my DH has returned with avengance, and so have all the other Celiac symptoms that I had suffered prior to going gluten free, though at the time, did not truly appreciate that I was in fact suffering these other symptoms, as they had been there so long, I just didn't know it any other way.

So one of two things will happen with regard to the blood test. I will either test positive, and that should then lead to a conclusive diagnosis. Or, more likely, will test negative, which will now be inconclusive.

Enter the biopsy. Knowing the probability is high for a negative blood test, I requested that the doctor also perform a skin biopsy on me. I suspect my doctor may not have done these before, he is a GP and not a specialist. But I can get in to see him, and he is very willing to work with me on a diagnosis. My wife and kids are far from textbook on any conditions they've been afflicted with, and our doctor has been good at not just accepting what conventional testing or wisdom says, and will keep digging. In fact, he's even stated as much that my wife and kids aren't textbook, so he can't rely on that. I see no reason he would be treat me any differently. I suspect as long as he's seen the notes to my file early enough, he will have already looked into the proper procedure by the time of my appointment, but I am also leaving nothing to chance, and have printed off a resource that squirmingitch shared with me.

I will be requesting at least a couple of biopsies, and from different affected areas of my body, perhaps one from my calves and one from my arms.

So this is as far as I've figured out. Then what?

How long typically does it take to hear back on biopsies? What if even this comes back negative? Is a colonoscopy next? Will a GI even give me priority if I am then referred?

And of course, if I am to leave that door open to move on to a colonoscopy, that means staying on gluten. But then how long will I be waiting? (Rhetorical question here). I don't want to do that! Do I?

I am very prepared to accept that I may not be officially diagnosed. I personally don't need it to tell me what I already know, that I do so much better without gluten.

But are there other implications? Does this preclude me from medical attention that I may need in the future? I've heard a lot about having it for the benefit of my kids. But privacy laws as they are, my kids will only need to state that I have it. They can't access my files for my children's treatment anyway. If I go to a restaurant and ask for gluten free, I would most certainly not be pulling out some sort of certificate, regardless of an official diagnosis or not. Not really any of their business, and if I state that I am Celiac, that should be enough. Never encountered that sort of issue anyway during my brief gluten free time. It was either an understanding and accomodating experience, or one of complete ignorance. There wasn't an in between, and these two scenarios are very easy to deal with, you either have a good comfort level and can dine there, or you get clear indications to move on.

So what about my experience going through this?

When I first went gluten free at the suggestion of the allergist who first noticed that at the very least, wheat is an issue, I was skeptical, thinking this won't make a bit of a difference. I was very quickly proven wrong within days, as the itching itensity very quickly subsided, and as time progressed, so many other things very clearly improved. I was strictly gluten free. No point in doing improperly and then not being able to know for sure.

Then the need to go on the gluten challenge came up. I honestly dreaded it. I questioned whether it would be worth it. And in the end, did it knowing that an official diagnosis, while not needed for my own reassurance, could prove beneficial for my future health care, and would certainly help convince my wife, who, while certainly recognizes I will need to be gluten free, and is very good at watching for gluten, is in denial that this is Celiac disease as she does not want me to have it. Avoidance of certain foods is nothing new to our household with three food allergy sufferers. I still find that, going through the gluten challenge, things I thought I would miss before, I simply have no desire to eat. Sure, there are some gluten containing foods that I enjoy, but they aren't the obviously gluten foods.

As for whether or not I have Celiac and DH? I don't want to have it as much as the next person. But I think I have already accepted it. An official diagnosis to me just puts the whole ordeal to rest. Like "we've proven it, now let's just move on."

I am counting down to when I can eliminate gluten again. I hate this constant itch and overall feeling of malaise. I look at my skin today, and feel so disheartened that these ugly lesions are back, after having almost disappeared. I even miss the taste of some of the gluten free alternatives that I'd become used to. And honestly, I am looking forward to having my first gluten free Christmas. No, I am not going to miss all that Christmas baking. I just want to feel better again.

[cyclinglady]

I applaud you for doing a gluten challenge!  It can be tough.  I never experienced a challenge, but I have been glutened and it is awful.  

I would let your GP attempt the skin biopsy if he is willing.  You can still pursue an intestinal biopsy.  I think with your GP’s assistance this is certainly possible.    The challenge for that is much less, only two weeks.   If you have intestinal damage, you have it now!  

You are right that about 10% of celiacs are seronegative.  Those with DH often have negative blood tests.  

It sounds like your wife is the one who needs to see the lab results.  She is probably weary of nagivating her and the children’s allergies.  And let’s face it, some people can not imagine giving up gluten (even though it might make her feel better if she chose to do so in support of you).   But I think seeing an improvement in you will reassure her.  

Health support?  You probably heard my story.  Hubby went gluten free almost 12 years prior to me per the poor advice of my allergist (yes, I have allergies too) and his GP.  It worked (after some trial and error the first year).  He go a lot of eye rolling, but I jumped on the bandwagon after it was apparent that the diet was working.  The very first symptom to go was snoring.  It came back with a vengeance after a gluten exposure.  No gluten = no snoring!  He just had surgery this year  and all his dcotors were on board.  But frankly, it helped that I had celiac and watched every morsel he consumed and worked with the hospital pharmacy to insure every pill was in fact gluten free.  We wish he had a diagnosis, but he does not.  He refuses to do a challenge.   His own mother died from autoimmune disorders which run on all sides of both our families (our kid is doomed).    You can get by without a diagnosis.  Now we just tell everyone we are a celiac family.  No one doubts us.  It is just easier.  

Here is one tip.  Get rid of the wheat flour.  For example, my kid wants to bake cookies for her friends.  I am buying all the items and she will bake at a friend’s house.  Flour can get everywhere.  I no longer hang in the kitchen during cookie day at my SIL’s house.  Do I give up on treats?  I bake all the same traditional goodies.  My kid likes them over anything store-bought and my extended family asks for seconds.  So, get your wife to bake gluten free or learn for yourself.  I spent one day before Thanksgiving baking with my daughter’s newly diagnosed celiac friend.  It was fun and we were safe.  

Hang in there and keep us posted!  

 

Edited December 6, 2018 by cyclinglady

[weebl]

Thanks, cyclinglady. I have read your story on here. I went gluten free immediately on the advice of my youngest son's allergist too. Honestly though, I think if I relied on testing, and it all came back negative (which I suspect it would have), then I would still be in the same boat, not knowing that I have Celiac.

I can't see my GP not being willing to try the skin biopsy, but who knows, there may be some techinical reason he can't, but I won't know until I see him. That is encouraging to hear an intestinal biopsy only needs a 2 week challenge. Even if the referral process takes months (or worse, years, not unheard of up here for specialists), then I don't have to sit eating gluten while I wait.

Giving up gluten is something my wife is contemplating for our household. Not that everyone necessarily adhere to that outside the home, but in the home, going completely gluten-free. The reality is, I suspect there will be a transition period as people eat up what's left, and it may not end up being 100% gluten-free in the house, though my meals certainly would be gluten-free.

We've done similar for the allergies in the house. Generally no fish/seafood at home, as 3 out of 5 of us have issues with that, 2 known to react, and the third would react based on tests, though my oldest son and I will have it on a rare occasion at home, usually when everyone else is gone, but generally, we would eat it at a restaurant or elsewhere. Blackberries and avocados are generally avoided, but not outright banished (my youngest son), and sesame is completely forbidden in the house (again, youngest son, those seeds go everywhere!) We definitely make it work, and it is second nature to everyone, but of course gluten is a whole different level of avoidance, and the CC risk seems to be so much higher.

Just to be clear on my Christmas baking comment, I meant I could do without eating it. I think any gluten baking will be phased out of the house, or at least severely limited. We've already mostly avoided it since I first went gluten-free. In fact, we have a bag of gluten-free flour bought just before my gluten challenge, just waiting for us to try on our first recipe. My wife has a friend, the mom of one of my youngest son's friends, who is Celiac and extremely sensitive to gluten. She's shared some of her baking with me, and it is phenomenal, so we will be asking her for her recipes for sure. I can see a day wheat flour is gone 100% from the house, but it may take time to get the others in the house used to the idea.

I will definitely keep everyone here posted. It is encouraging to share with those who can relate, and at the same time, I like being able to share what I am going through to help others that are new to this.

[GFinDC]

Hi Webl,

The doc needs to take the skin biopsy from next to the DH lesion, not on it.  The gastro would do an endoscopy, not a colonoscopy.  If it comes to that.  But if you are diagnosed with DH via skin biopsy, there is no need for an endoscopy.  Endoscopy looks at the small intestine, while colonoscopy looks at the colon.

Celiac disease is passed on through genes, so any of your children may have the genes.  About 30% of people have at least one of the celiac genes, but only 1 to 3% get celiac disease.  You hear different numbers from different sources.  So your kids could/may develop celiac disease at some point.  Your first degree relatives are at a higher risk for celiac disease.  And other AI diseases.

There is a section of the forum dedicated to DH where you can find more info on it.

[weebl]

I had my DH biopsy done yesterday, and I was very impressed with my GP. It was obvious he researched what to do, if he didn't already know, and I did not need to rely on any material I brought along regarding how and where to obtain a sample. We found a site with active lesions (my right calf), and identified a spot adjacent to the lesions. Other than feeling s slight needle prick, then some tingling as the freezing set in, I could not feel the procedure at all. I will follow up with him at my annual physical I have scheduled for next week. His staff provided him with one biopsy kit, so it was obvious that we would only sample from one site.

Incidentally, and not surprisingly, the blood work came back negative.