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How Many People Were Ok Before Diagnosis?

concernedmamma

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concernedmamma Explorer
concernedmamma
Posted

Hey there!

Just wondering how many out there were NOT ill prior to diagnosis- and now that you are gluten-free, how have things changed? I got my BW done since my two boys were diagnosed with Celiac- about a year apart. I finally went, just so it would stop hanging over me as 'something I should do'. Feel fine, no obvious symptoms. My blood work came back strongly positive. I have decided to go forward with the biopsy since I think, down the road, I will need to know there was damage in order to stay loyal to the diet.

So, my question- if you weren't ill before diagnosis, how do you feel now that you have gone gluten-free? Did you get the biopsy? Even though you weren't ill, was there still damage on endoscopy?

Thank you!

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heidi g. Contributor
heidi g.
Posted

Wow your lucky. I read that you can have no symptoms but still have damage

domesticactivist Collaborator
domesticactivist
Posted

I don't know whether I have it but my son does. My whole family went gluten-free and then did GAPS. I wrote a blog post called changes on gaps with my experience. You can find it on the blog linked on my profile.

There is a regular on here who is a chef and has celiac without symptoms. I think her name is love2travel or luv2travel. Look for her posts!

Duhlina Apprentice
Duhlina
Posted

So, my question- if you weren't ill before diagnosis, how do you feel now that you have gone gluten-free? Did you get the biopsy? Even though you weren't ill, was there still damage on endoscopy?

I didn't have any of the GI symptoms like most people do. Well, I was extremely bloated - which was what made me seek out a self diagnosis, but I never really had the diarrhea or other issues. I've always had migraines, eczema and have been complaining to the doctor for TWENTY YEARS that I am ALWAYS exhausted no matter how much sleep I get! It was just recently that I started doing my own research and put two and two together and went to my doctor and INSISTED on being tested. When I went for the endoscopy the doctor let my husband stay in the room while he did it and he told him there was NO WAY I had celiac because my villi were completely normal! I think even he was surprised when the biopsy came back positive.

I've been gluten free about 3-4 weeks now. Do I notice a difference? Not really. Not yet anyway. I do notice I'm not as bloated, which is great but other than that I'm still exhausted all the time, although I haven't had a migraine since I've gone gluten-free! :D From what I've read it can take a lot longer until I notice a big difference, so I'm trying to remain patient!

T.H. Community Regular
T.H.
Posted

My daughter would be close, I guess. As far as I knew, she wasn't ill, although she complained of being tired sometimes. But she slept poorly, anyway, so we assumed that was why she was tired, you know? We tested her because 2 people in the family had come back positive for the disease.

Since she's gone gluten free, though, we've come to realize that she had lots of symptoms, we just never realized that they WERE symptoms. I always thought she was a rather anxious little girl, prone to emotional outbursts and easily upset by others' woes or anger. Hard to put to bed. Disliked crowds, said they were 'pressing in on her' if she was in them for too long. Picky eater. Cute chubby cheeks.

All of the above has turned out to be celiac disease rather than an inherent part of her personality. You could have knocked me over with a feather!

Without gluten, the anxiety is gone, the outbursts are greatly diminished, and while she still has a lot of empathy, a stranger's pain won't make her sad for the rest of the day now. She can fall asleep more easily. It turns out that gluten makes noise, touch, and taste more unpleasant for her, so without it, crowds don't bother her at all, and food tastes very different. Her cheeks were actually a little bloated all the time, not chubby, and without the gluten (and dairy) they thinned out pretty quickly.

I know this isn't the case with everyone, as some have literally no symptoms whatsoever, even now when they're gluten free and accidentally get gluten cc. But you may find that as you go gluten free, some things can change that you never knew were even related. Also, for some, after being gluten free for a while, you will start to develop symptoms when you accidentally ingest gluten.

My daughter didn't have gut problems before going gluten free, but around 6 months after she changed her diet, she started having major stomach pains if she ingested gluten. It was a total surprise, but it's something that happens to many of us, so it's always a possibility.

We did not get the endoscopy for her at the time, but in part that's because we knew it was in the family at that point. If we had any doubts, the reaction she gets to gluten right now is so dramatic, they would have erased them.

shauna

lovegrov Collaborator
lovegrov
Posted

My father did have DH but no other real symptoms and he was highly positive on the blood tests. He did notice some improvement in a number of small things like mood and gas after going gluten-free and he realizes he needs to be gluten-free. He saw how horribly ill I was and knows that could have been him.

richard

heidi g. Contributor
heidi g.
Posted

Can you have issues sleeping when you have Celiac disease?

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Lori2 Contributor
Lori2
Posted

Can you have issues sleeping when you have Celiac disease?

Yes, definitely. When my sleep problems first cleared up after going gluten free, I didn't associate it with the diet. However, when I got glutened and the problems returned for the three nights that my symptoms (diarrhea, etc.) last, I got the connection.

sahm-i-am Apprentice
sahm-i-am
Posted

I didn't have symptoms that doctors would identify with Celiacs. Edema in left foot, lymph nodes in abdomen swollen, anemia, weight loss. They seriously though I had cancer and were prepping me for chemo! Never had a tummy ache or skin issues. Now that I have been gluten free for 1 and 1/2 years my edema is better, although not gone and I have gained weight back and anemia is gone. I am having trouble getting my celiac bloodwork numbers to within normal, but I think it might take a while. And when I do eat gluten now? Nausea and vomitting for a few hours and then fine.

Jenni121 Rookie
Jenni121
Posted

The only symptom I had was iron deficiency anaemia. I've never had any GI troubles, skin issues, nothing. I was diagnosed following a biopsy about 2 weeks ago. Since going gluten free, I feel much worse. Im more tired than I was before (which I never thought possible), I'm cranky, irritable and just generally feel unwell. I have trouble getting going of a morning, whereas before I went gluten free I was up at 3:45am everyday to run/gym. I'm lucky if I exercise 4 times a week now.

Things better improve. This is going to be very hard to stick to if I dont start feeling better, given I had no symptoms before.

Sorry for the whinge. Just having a particularly bad day with this today.

sa1937 Community Regular
sa1937
Posted

The only symptom I had was iron deficiency anaemia. I've never had any GI troubles, skin issues, nothing. I was diagnosed following a biopsy about 2 weeks ago. Since going gluten free, I feel much worse. Im more tired than I was before (which I never thought possible), I'm cranky, irritable and just generally feel unwell. I have trouble getting going of a morning, whereas before I went gluten free I was up at 3:45am everyday to run/gym. I'm lucky if I exercise 4 times a week now.

Things better improve. This is going to be very hard to stick to if I dont start feeling better, given I had no symptoms before.

Sorry for the whinge. Just having a particularly bad day with this today.

You could very well be going through withdrawal...a lot of people do so give it some time. I know, it's difficult when you feel like crap. You might google withdrawal (see the google button in the top right corner and it'll probably pull up a lot of posts). Or just keep reading the forum and you'll see what you are experiencing is not that unusual. I hope you feel better soon.

Silencio Enthusiast
Silencio
Posted

I had no symptoms at all before I was diagnosed with Celiac. The post above me makes me think I will be going through the withdrawls soon too now that im on all gluten free food.

  • 3 weeks later...
love2travel Mentor
love2travel
Posted

The only reason I was tested for Celiac is that a sister of mine is gluten intolerant so I requested the bloodwork. I was SHOCKED to find I indeed had the disease and requested the biopsy, too, as I could not (or would not) believe it. I had no symptoms which makes it very tough to tell whether I have been glutened or not. Don't get me wrong - I have a lot of compassion for those who get ill for days on end and would never, ever wish I would get ill. I have had bloodwork done twice to ensure I am on the right path and I am. My numbers are now negative. However, after diagnosis and from learning a lot from this board, I found that I DID have symptoms after all including miscarriages, rough and cracking fingernails, poor tooth enamel...now my teeth and nails are very healthy.

I did not want to hear the truth that I had the disease as I love food soooooooooo much. However, I still create nearly everything I used to, just differently! :)

Linus Newbie
Linus
Posted

My sister, daughter and I were all asymptomatic or symptoms that were pointing to Celiac. Afterwards we all noticed things change that were with us all our lives. Most notably were changes in hunger (less) and absence of joint pain. We also had a lot of other changes (bowel related). I guess for us, we have been living with celiac for so long (most of our lives) that we did not recognize the symptoms. The symptoms we had were considered part of everyday life. Only after removing gluten did we notice changes that made us feel better overall.

Silencio Enthusiast
Silencio
Posted

The only reason I was tested for Celiac is that a sister of mine is gluten intolerant so I requested the bloodwork. I was SHOCKED to find I indeed had the disease and requested the biopsy, too, as I could not (or would not) believe it. I had no symptoms which makes it very tough to tell whether I have been glutened or not. Don't get me wrong - I have a lot of compassion for those who get ill for days on end and would never, ever wish I would get ill. I have had bloodwork done twice to ensure I am on the right path and I am. My numbers are now negative. However, after diagnosis and from learning a lot from this board, I found that I DID have symptoms after all including miscarriages, rough and cracking fingernails, poor tooth enamel...now my teeth and nails are very healthy.

I did not want to hear the truth that I had the disease as I love food soooooooooo much. However, I still create nearly everything I used to, just differently! :)

Besides myself, your the first I heard of someone having no symptoms while on gluten. My doctor said I have no symptoms because I built up such a high tolerance to it. I wonder if thats the same for you.

love2travel Mentor
love2travel
Posted

Besides myself, your the first I heard of someone having no symptoms while on gluten. My doctor said I have no symptoms because I built up such a high tolerance to it. I wonder if thats the same for you.

That could be. My villi were very damaged - completely flattened. When I went on my gluten challenge for nearly four months I confess I LOVED it! I made a long list of things to eat one last time and crossed each one off the list.

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