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Fatigue..really?

staci002

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staci002 Rookie
staci002
Posted

From the moment I stopped putting gluten filled foods in my mouth my stomach stopped bloating. Could this be? After 2 years of suffering and feeling horrible. After many tests with many different doctors looking at me like I had two heads. Of course though I thought maybe it was just a fluke. Since I had negative blood test and negative biopsy. So..my daughter and I went to the Olive Garden and I ordered pasta(not gluten free). (I had been gluten free for 9 days at this point and had no stomach issues) This was going to be my life changing moment. If it doesn't make me sick then I will belive the doctors, if it does well then I guess I know my own body better than the doctors. As soon as I finished my last bite my stomach was already starting to swell. By the time I walked out I looked 6 months pregnant. The following morning it took all I had to get myself out of bed and drag myself to work. Besides the array of stomach issues, I get headaches and EXTREME fatigue. I was sick for the next 5 days straight. I missed two days of work and when Friday finally rolled around I hit my couch right after work and never moved until Monday morning. This was my ah hah moment!!!

Is this really what could be causing my fatigue, muscle aches, and pain? I have not had energy to do much of anything for the past 2 years. I have missed so many days of work that everyday I crossed my fingers that it would't be my last. I feel like I have slept the past 2 years of my life away. Any free time I had was spent sleeping, praying that I finally would have some energy again one day.

My question for you all is (even though I know everybody is different)...Was fatigue a major issue for you guys? If you get glutened how many of you suffer with fatigue as a side effect?

Thanks so much, Staci

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eatmeat4good Enthusiast
eatmeat4good
Posted

I literally slept for 7 years....I could not think at all...I was tired, asleep, or in the bathroom. That's it.

Yes, fatigue can go away.

Before that I functioned all day every day...then I became the patient with "two heads" as you say. No one knew what was wrong. 7 months "clear of gluten" and I have no more fatigue.

You know your body best. I think you conducted the perfect test...and your results sound very reliable in terms of Gluten Intolerance/Celiac. :)

Here's to being able to stay awake for life! ;)

staci002 Rookie
staci002
Posted
  • Author

I literally slept for 7 years....I could not think at all...I was tired, asleep, or in the bathroom. That's it.

Yes, fatigue can go away.

Before that I functioned all day every day...then I became the patient with "two heads" as you say. No one knew what was wrong. 7 months "clear of gluten" and I have no more fatigue.

You know your body best. I think you conducted the perfect test...and your results sound very reliable in terms of Gluten Intolerance/Celiac. :)

Here's to being able to stay awake for life! ;)

Eatmeat4good,

You really just made my day! It's so helpful to know that I'm not alone. I'm looking forward to hopefully more energy, less fatigue, and making memories with my family instead of sleeping my life away :)

Ramos1985 Newbie
Ramos1985
Posted

So I was just diagnosed several hours ago with celiac and as my Doctor and I went through the symptoms it became pretty apparent that my chronic fatigue was caused by my body's reaction to gluten. While he said celiac impacts people differently, I would have to say that now that I look back at times when I became extremely fatigued after eating or drinking something high in gluten that the signs were definitely there before I decided to go to the doctors.

Now that I am going to have to change my diet I am interested to see if I will have more energy as I begin cutting glutens out of my food and drink.

eatmeat4good Enthusiast
eatmeat4good
Posted

You will definitely have more energy as the months go by. I'm still getting better. To both of you: Take your vitamins. Malabsorption is hard on the body and you should have vitamin levels checked. I didn't at first. Then after 6 months of taking 5000 mg D a day, checked my blood and I was just inside the range or normal. Wonder what it was before? :blink: The AEDK and the B vitamins are very important in addition to B12 and iron and folic acid. I think that is the Celiac list. Anyway, the more consistent I am about vitamins, the better energy I have. Just another thought for you as I am still in recovery myself.

Staci002- I'm glad I was able to give you hope. Every little bit I can give helps to erase all those senseless years of misery and loss. You kinda made my day too! ;)

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I was so fatigued and in pain I spent several months bed-bound. Drs. tested me for everything under the sun (except celiac) and wanted to diagnose me with either fibromalysia or chronic fatigue syndrome. Now over a year off of gluten I am able to do things again instead of wasting my days in bed barely aware of what day it is or what is going on around me.

Bottom line--Yes the fatigue is caused by gluten. You're symptoms are real. It's not all in your head.

BTW, next time you go to Olive Garden you can get gluten free pasta you know?

staci002 Rookie
staci002
Posted
  • Author

Bottom line--Yes the fatigue is caused by gluten. You're symptoms are real. It's not all in your head.

Thanks so much for your reply. It's great to know there is hope!! :)

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Kim69 Apprentice
Kim69
Posted

Yes fatigue was incredible! I felt like just dropping to the floor in a heap and not moving!

Gluten poisoning affects me for about a week. I get ab pain, swelling, gas, diarrhea but worst of all is the tiredness. It is a year since going gluten-free. I am still either getting cross contaminated, gluten poisoning or have a reaction to some other food. You may need to be patient! I still haven't gone back to running or cycling. 

anabananakins Explorer
anabananakins
Posted

Is this really what could be causing my fatigue, muscle aches, and pain? I have not had energy to do much of anything for the past 2 years. I have missed so many days of work that everyday I crossed my fingers that it would't be my last. I feel like I have slept the past 2 years of my life away. Any free time I had was spent sleeping, praying that I finally would have some energy again one day.

My question for you all is (even though I know everybody is different)...Was fatigue a major issue for you guys? If you get glutened how many of you suffer with fatigue as a side effect?

Thanks so much, Staci

Yep. Day three of being gluten free I had an amazing surge of energy. It's awesome. I used to go to bed at 8pm most nights, waking up at 7am still feeling exhausted. Suddenly it was 11pm and I was still wide awake :-) Even if I have a late night I now wake up feeling good, not like the old, familiar 'so exhausted I could die' feeling.

My whole life I was flattened by exhaustion. As a small child I was the one who had to go to bed earliest, even though my siblings are younger. My mum used to pick me up from school early because I couldn't always handle a full day. Everything was such a struggle. Now I feel great.

I did have a minor set back a few weeks after going gluten free, and we discovered my vitamin D levels were really low. Getting onto the Vit D helped even more.

sherrylynn Contributor
sherrylynn
Posted

Now I have to wonder. They say you get Chronic Fatique Syndrom from a major illness or surgery. Maybe what people who have that actually have Celiac. Starting to think people on this forum are smarter than the "Doctors" that we keep going to.

eatmeat4good Enthusiast
eatmeat4good
Posted

Yeah, they diagnosed me with Fibromyalgia and left me to rot on my couch without ever testing anything else. I was so neuro-brain fogged I couldn't think what tests to ask for. It is supposed to be the LAST diagnosis not the first. These people on Celiac.com saved my life.

staci002 Rookie
staci002
Posted
  • Author

Yeah, they diagnosed me with Fibromyalgia and left me to rot on my couch without ever testing anything else. I was so neuro-brain fogged I couldn't think what tests to ask for. It is supposed to be the LAST diagnosis not the first. These people on Celiac.com saved my life.

I couldn't agree more! I was also diagnosed with Fibromyalgia and Chronic Fatigue Syndrome. My family doctor sent me to a Fibro specialist three hours from where I live. The information that I got from the specialist shocked me...her exact words.."Fibromyalgia is something you will have for the rest of your life so you are just going to have to learn to deal with it". I couldn't believe my ears, I left there in tears. But now there is hope and I'm beginning to doubt my Fibro diagnosis. Maybe all my symptoms are coming from the gluten. I feel renewed again with hope!

mushroom Proficient
mushroom
Posted

Now I have to wonder. They say you get Chronic Fatique Syndrom from a major illness or surgery. Maybe what people who have that actually have Celiac. Starting to think people on this forum are smarter than the "Doctors" that we keep going to.

Actually, my niece has never overcome her chronic fatigue despite being on strict gluten free diet. They can go together, unfortunately, as well as being a symptom of the other. (Not wishing to be a bucket of cold water :( )

krystynycole Contributor
krystynycole
Posted

I almost quit my job because of the fatigue, but going gluten-free has saved my job and has made me much happier as I'm not so exhausted all the time.

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      High DGP-A with normal IGA

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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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