Not sure I can do this :-(

[Vasiliki]

Good morning, 

You wonderful folks have been so incredibly helpful. I am turning to you once more. 

I finally found a doctor in my area that is willing to listen to my concerns. Well, she's a naturopath, but one of the top recommended in the city. I have an appointment with her on Nov 19th. 

Since Oct 4th, I've gone back to a gluten diet. Tracking what I eat and any changes I notice. I'm eating a sandwich a day, and eating out with friends again. 

At first it was just my gastro and skin symptoms that returned. Not too bad. But now has been the return of my most dreaded lifelong issues; A constant abdominal pain (about 5-6 on the pain level, flaring to an 8-9 at times) and my debilitating migraines. I didn't realize how much my diet had changed how good I felt until I went back. I was crying in the truck the other day because it brought back the realization that I've spent my whole life in pain, and I thought it / this was normal. That a stomach ache at around 5-6 on the pain scale was 'normal' for me growing up. 

After going gluten-free for almost a year, I realize how much better I felt. And going back to it feels so incredibly wrong. Like, wrong wrong. I feel like my body is desperately trying to tell me to go back. At Thanksgiving yesterday, I almost cried because I put a huge piece of garlic bread on my plate and all I could think about is: How bad is this going to hurt later...? Would the migraine flare up again until I couldn't walk?

Now I'm laying in bed, curtains closed, what feels like a fork lodged in my abdomen, texting my boss to tell her I can't stand up without getting vertigo. 

I feel like I cant do this until Nov 19th. It's worse than before. And my lovely Naturopath told me that if it feels this bad to stop, but if it's something I want tested then that's my choice. 

Have any of you done the gluten challenge to try and get a positive? Is it worth it? 

Cause right now... I feel the worse I've felt in a long time. Even my husband has noticed I'm not my usual self

[RebekahLynn]

We recently tried to with my daughter. It is my understanding that you really are supposed to eat for 12 weeks before testing. We made it to 4 weeks and tested. It was negative. Unfortunate because we needed the medical documentation but we will not be trying to make the 12 weeks. 

[nvsmom]

Not every one can make it through a gluten challenge.  Two to three months of sickness is no fun.    If you can't get through it all, test immediately after going gluten-free.  You might have a detectable antibodies, a positive is a positive.  If it is a negative, then it is celiac disease or NCGS most likely.

Good luck.

[Vasiliki]

Not every one can make it through a gluten challenge.  Two to three months of sickness is no fun.    If you can't get through it all, test immediately after going gluten-free.  You might have a detectable antibodies, a positive is a positive.  If it is a negative, then it is celiac disease or NCGS most likely.

Good luck.

It is harder than I ever imagined :-( I'm supposed to be seeing my naturopath on Nov 19th, but I honestly don't think I could make it that long. My symptoms are bad enough that they are starting to cause me to miss work again because I can't stand up.

So I called up an MD that is taking patients in our local area, and I'm just going to go in and lay it on the line. Send me for blood tests, even though it's only been 1.5 months at high doses of gluten. Get it on the books. Get a referral for a derm. Explain to him that the medical system has let me down too many times in the past, and he can either help me or I'll find someone else.

I think I've just hit that wall.

 

It also doesn't help that my mom and I had a heart-to-heart the other day, and she proceeds to tell me:
"Oh our family has always had stomach issues. Did I ever tell you I was hospitalized as a baby because I couldn't digest formula? It's true! I was actually one of the infants they developed rice-based formula's for because anything else would leave me screaming and throwing up and failing to thrive!"

Me: "Are you kidding me? Isn't that what happened to me too?"

Her: "Yep, you too. Once we switched you to rice formula or formula without wheat, you were fine!"

Me: "Sooooo did you ever think to get me tested as a child for an allergy, or celiac?"

Her: "It crossed my mind a few times as you were growing up, but the doctors told me it was probably just lactose issues"

Me: "What about you? Did they ever want you to get tested?" (She's had LIFELONG issues that mirror mine)

Her: "I think so... Meh, never got around to it"

Uggggghhhhhhh Moommmmmmmm seriously?! I'm 28 and had these issues since I was in kindergarten! Only NOW it comes up that doctors recommended you be tested for Celiac and that I have identical issues to you?!

 

Just a wee bit frustrated at the moment

[nvsmom]

Just a wee bit frustrated at the moment

(((HUGS)))

[Vasiliki]

(((HUGS)))

Thanks ((((((nvsmom))))))

Update:
Today I went to see this new MD. Apprehensive. So I wrote out three pages worth of notes to make sure I didn't miss anything. Wrote down the tests you had all recommended and a few other things. Walked in, he asked what brings me in. I tell him 3+ years ago I began tracking my diet due to symptoms, that going gluten-free for 1yr resolved nearly them all. Reintroducing it has seen a return of symptoms, so I think it may be time to get tested for Celiac. I left it kind of open-ended, seeing what he was going to say. I didn't even really use my notes, just a few minutes of listing off things I've noticed over the years.

He responds: "Sounds like you are gluten sensitive, if not Celiac. We will send you for all of these tests, and if they come back negative, I am still going to say you should eliminate gluten from your diet as these tests aren't always 100%. Based on your symptoms, it's obviously not good for you. And the tests sometimes don't catch all Celiacs. Lets get you checked out"

So he orders up blood work and asks if I'm okay with getting a whole bunch of things checked at one time. Well, absolutely!

Hands me the lab order and says he'll talk to me soon about it. Sends me on my way in less than half an hour.

I left the office and sat in my car and cried. Fighting for years with other doctors, and this one actually 'gets it' within minutes.

As sick as I've been trying to do this gluten challenge, I'm so so glad I did.

[squirmingitch]

That is great!!!!! I'm glad you finally found a doc that has a brain. Let us know what happens please.

[nvsmom]

Yay!!!!   I'm really happy for you!  That doctor sounds like a keeper.

Let us know how your tests go.

[Vasiliki]

Update:

According to my doctor, all tests came back "Normal". However, I will be going down to the office today to hopefully pick up a copy of the labs for my records.

I kind of figured as much, as it was not 3+ months of glutening myself. The blood test was done after 2 months, because I just couldn't do it anymore. It was getting bad enough to start missing work again, which is not worth it just to get a positive on a test.

I have since returned to my gluten free diet after the blood test. I know I can't get a positive from this point, but honestly, I couldn't handle it. My brain fog returned, my depression symptoms returned, joint paint, my weird itchy rash /lesions on my legs, hips and abdomen, crippling fatigue and abdonimal pain that would leave me sweating in a fetal position on the bathroom floor. Nothanks.

I'm still keeping my naturopath appointment for Nov 19th, since she's specialized in a variety of 'allergy' and gastro issues.

MD told me that, based on my symptoms and the 3 years of documentation, he would very strongly suggest just going gluten free and forgoing anymore testing. He said that he strongly agrees that it may be Celiac, but that if I'm okay just going gluten-free, skip the ordeal and just switch.

Another avenue we discussed briefly was getting in with a dermatologist to get my lesions tested. However, there are two problems:

1.) The rash only appears when I do BIG doses of gluten, and the idea of doing that makes me almost want to cry. And even if I have large doses of gluten for a while, it doesn't always 'flare up' on cue. Sometimes it's the day after. Other times it'll show up several days later with a vengence.

2.) No dermatologist office I've called is familiar with DH or how to test for it. The local Celiac association doesn't have any references either and told me they can't recommend specific doctors due to legal reasons.

I'll try to pick up a copy of my labs today so that I can check them out and hopefully share them here.

At least I can officially say that my MD "strongly suspects a gluten sensitivity or Celiac". So, at least I have someone officially on my side.
 

What will I do next? No idea. Right now I'm just thankful I can finally stop forcing myself to eat bagels and sandwiches LOL

[nvsmom]

I'm sorry you didn't get any firm answers.  Is your doctor going to add non-celiac gluten sensitivity and possible celiac to your file? It could be helpful to have NCGS as a firm diagnosis and celiac disease as a possible diagnosis.

I'm glad your doctor is on board with the gluten-free diet.  I hope you recover quickly!

[CeliacBurger]

Hello. Did he order the one that starts with a D? Because I only showed positive on that one. I was negative for all the others. But that's sufficient for a diagnosis from what I understand  

The other thing I wanted to mention is that there are other forms of autoimmune response to foods.   It's not just gluten and nothing else. There are several other wheat proteins in these types of foods that could be causing an autoimmune reaction for you. One that's very similar. It's something that Chris Kresser constantly mentions. Gluten is just one of many possible reactive proteins.

So I wouldn't say you don't have an answer. The fact that you felt better off of it, and felt worse when you went back, means you've got your diagnosis. Be confident in that.

It's really sickening to me that traditional doctors are such a useless waste of time. Frustration. And source of anger for all of us. But this is the reality of the current medical system. Fortunately the information through websites like this, is getting out to the lay people. They no longer hold the monopoly on medical information. And they hate that. 

[Vasiliki]

On 2015-10-24, 9:14:27, nvsmom said:

I'm sorry you didn't get any firm answers.  Is your doctor going to add non-celiac gluten sensitivity and possible celiac to your file? It could be helpful to have NCGS as a firm diagnosis and celiac disease as a possible diagnosis.

I'm glad your doctor is on board with the gluten-free diet.  I hope you recover quickly!

 

On 2015-10-31, 11:20:45, CeliacBurger said:

Hello. Did he order the one that starts with a D? Because I only showed positive on that one. I was negative for all the others. But that's sufficient for a diagnosis from what I understand  

The other thing I wanted to mention is that there are other forms of autoimmune response to foods.   It's not just gluten and nothing else. There are several other wheat proteins in these types of foods that could be causing an autoimmune reaction for you. One that's very similar. It's something that Chris Kresser constantly mentions. Gluten is just one of many possible reactive proteins.

So I wouldn't say you don't have an answer. The fact that you felt better off of it, and felt worse when you went back, means you've got your diagnosis. Be confident in that.

It's really sickening to me that traditional doctors are such a useless waste of time. Frustration. And source of anger for all of us. But this is the reality of the current medical system. Fortunately the information through websites like this, is getting out to the lay people. They no longer hold the monopoly on medical information. And they hate that. 

I also included strict reduction in eggs and milk (to make things easier on my system right now). However, it seems to be gluten that causes a huge huge reaction. Eggs might make my stomach hurt, but not nearly as miserable as when I have bread-based products.

After the testing phase, I went strict celiac diet. The itching on my legs, back of my legs, hips and spots along my body were INSANE!! Waking me up in the middle of the night. I was going mad for about 2 weeks afterwards. Just when I thought it had stopped, it would flare up again dramatically (and I would realize I misread a label or something).

Since becoming really strict, I've had no more horrendous itchy spells. No more new lesions on my lower legs or hips No more waking up scratching.

Best of all? My husband noticed a difference. He was very supportive from the beginning. But as he noticed I was staying awake, that I wasn't scratching, that I wasn't curled up in the passenger seat after going out to eat with friends, he fully agrees I'm better now than I have been our entire relationship. My moodswings have calmed down. My energy has absolutely skyrocketted. My migraines have stopped completely. My depression symptoms have stopped, which got scary sometimes. I haven't thrown up! And... (lets get graphic here)... I haven't almost pooped myself in a while LOL! Cause you guys needed to know that! But it's true! No more mad dash in the middle of the night.

I started crying in a restaurant the other day (just quietly to myself) and my husband asked me what was wrong, did I eat something wrong. I had to tell him I didn't realize how much feeling yucky had robbed me of wonderful evenings with him. That up until recently, going out to a restaurant had always left me wondering how long afterwards I would 'get hit' and have to go to bed.

Last night, after eating at The Keg (with an amazing waitress who knew what celiac was, and the manager was incredible) I was able to stay up with my husband and play video games instead of being sick in bed.

I don't care if I don't have a 100% diagnosis. I know in my heart and soul that this is what was making me sick my entire life and I will absolutely never ever go back. Ever.

[RMJ]

I am happy for you!

[nvsmom]

  Yay!  Just wait a few months and then you'll be even better off!