I Think I'm Celiac? Actually At This Point I Hope I Am.

[EternalEssence]

I'll try to keep this brief, I'm somewhat convinced I'm celiac but my doctor has me thinking otherwise. Long story short, my body started malfunctioning a couple of years ago. It started with skin rashes (eczema), dry itchy skin, blurry/itchy eyes, cracks in the corners of my mouth. Then it moved onto irregular bowel movements, chest and back pains, smelly stool, pains in my hips/groin, swollen glands, discharge from rectum, libido plummeted etc. Then my joints started hurting constantly, my nails are misbehaving (spots appearing under my nail like a fungus or something), the pains in my lower right abdomen got worse, my mood really started to shift and I felt depressed.

During this time, since I don't have a family doctor, I bounced around a few clinics. Most said nothing was wrong with me (with no tests to back that statement up). Then I hit one doctor who said it was anxiety, and tried to send me to a head doctor. Finally, I found a family doctor who took me seriously.. He sent me for blood work (not celiac tests) and next week I'm heading to a specialist because he's worried it could be cancer.....

But this is where it get's interesting for me. I read up on Celiac and it sounded like many of my symptoms are the same.. and my Mother actually has similar problems. So I went gluten free for two weeks, and I thought I was feeling better (I've felt bad for so long, I couldn't remember if I did or not). It's at this time I saw the family doctor for the first time, he told me it wasn't Celiac.

So I started eatting gluten again, and about 3 days later I realized hey my joints are hurting again, my skin is dry again, my mood is darker, and the pain in my abdomen/leg/groin is no longer a random ache like the past couple of weeks it's a pain/cramp. So I went gluten free again. Within 2 days, my chest and joint pain lifted. My mood improved. My bowels started functioning a little more normal, and the pain in my lower right side/groin/hip lifted considerably. There was still a random ache sometimes, but the pain was gone.

Back to my family doctor for the blood results, I told him how I was feeling. He said gluten free is almost immediate so after 2 weeks I shouldn't still have an ache in my side/groin/hip. He didn't test me for celiac because you have to pay for the test and that's probably not's what's wrong.

Yep, I started eating gluten again. Now here I am 3 days later, my skin is scaly again, I've noticed my mood starting to drop and the pain/cramp in my right side and back are in full force. No longer a dull ache every blue moon, it hurts. And I'm constantly hungry, another sign correct?

So I guess my question is, after you went gluten free did you have residual aches and body malfunctions that took time to heal? In my opinion when I stop eating the stuff, the pain goes almost immediately and my joints stop hurting in a few days. My stomach starts to level out and feel less bloated, and my mood lifts. But, even after two weeks, I still get a dull ache randomly in places where there was once pain and some of my less desired malfunctions (nails, bowel movements) are still not 'normal'. I figured that 2 years of damage must take time to heal so all this makes sense, but my doctor saying it would be immediate still makes me question it.

Just looking for advice, it's driving me a little insane and I just want to know. The specialist is going to check for cancers and the like, and I suspect he'll find nothing (please god) leaving me in the cold again. At least if you all say that this sounds normal, it'll set my mind at ease and I'll accept that there is a high probably I am celiac.

Thank you for your time,

/D

[runningcrazy]

Hi, I only had time to skim through really quick right now, I'll read your whole post later. But I'd just like to tell you that its normal for doctors to deny it. My doctor told me it's not, and that if it was it would be so horrible and my life would be so stressful etc. I took 3 different blood tests and each one was negative. Still, I felt better gluten free so i've stuck to it. My enterolab results have said I am reacting to gluten and thats proof enough.

I was at the same thing. I actually wanted it to be celiac because I wanted it to be something I could pinpoint and avoid, and feel better! I didnt care at the time I was feeling sick about the restrictions, I just wanted to feel better!

Hope all works out for you. If you felt better gluten free, regardless of what anyone says, I'd stay gluten free.

[Jestgar]

If you are going to pursue the other testing anyway, go gluten-free so at least you feel better while you're waiting to find out. You have nothing to lose but the pain.

[tarnalberry]

You know that eating gluten hurts you, so why continue doing it? Celiac disease/gluten intolerance is one of the few cases where you don't need a doctor's diagnosis to completely treat it. If there are still problems *AFTER* you go gluten free for a while, then you'd investigate other causes.

[GFinDC]

Hi Eternal Essence,

It sure sounds like either celiac or gluten intolerance. Your doc is right in a way. Many people here report feeling better soon after starting the diet. But there are also people who don't feel better right away. There is a wide range of healing times and also a wide range of symptoms. If it hurts don't do it is good advice. You may think you have eliminated all gluten but it is a hard thing to get rid of if you are still eating processed foods or eating at restaraunts.

I agree that you should try the diet. A full 2 or 3 months is a good test. That is enough time to learn the basics of the diet and maybe get to feeling better. It took me a little over 2 years to really feel pretty much healthy again.

[Roda]

You got great advice from the others. Why not ask the specialist to run the celiac blood tests if you are wanting to go that route?

[AmyT]

Eternal Essence, I believe you are because I have had the exact same symptoms! However, I don't have an "official" diagnosis through all the blood tests (only had ttg test) or biopsy. I have laid it out with my dr. and we compared all the blood panels from the last 5 years and he is convinced that it is "sprue" as he calls it. It is was it is he says and keep doing what I am doing. Whatever makes you feel good.

As your gut heals, you really really need to be careful what you are putting into it. I learned the hard way at first, after I stopped gluten for 3 days I felt great, then a week or 2 later, I started feeling bad again, but I had no gluten, it was dairy. Then I had to reevaluated everything in my house. Not to mention eating out, that is a big no no while figuring this all out. (I can have just lettuce at a resatuarant and I still feel the itchy eye and skin come on). So, then I figured, if you had a weeping open sore on your leg or arm, would you put crap on it? Therefore, eat really clean whole, I would suggest organic food. Easy to digest foods such as fish, chicken, bone broth soups, tender ground beef. No crucerifious veggies for a while, no dairy, no soy, no HFCS. You have to baby your very tender insides.

I would up you vitamin B's, and iron for sure. I still get the cracks on the corner of my mouth (lack of b12) if I work out too much and get a tiny bit run down, so resting your healing body is key.

You will get better over time and it is not a linear thing, it will be up and down but the farther away from gluten you get the better it will become! Amy