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Am I The Only One Who Has Doubts?

StormyWen

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StormyWen Rookie
StormyWen
Posted

Recently my sister-in-law (who is a physical therapist) mentioned that I might try going gluten free to see if it helped me with my joint pain/inflammation.  I was completely gluten free for 12 days and wasn't really sure if it helped with the joint pain but what I did notice was that I had more energy, no headaches, no nausea, no stomach aches and I stopped taking my prescription acid reflux pill for the last half of that time and didn't experience any symptoms.   

 

History:    My brother probably has celiac disease.  He has been gluten free for over 5 years.  If he ingests the tiniest amount of gluten by accident he gets severe joint pain, heart burn and is extremely sick.  He's mentioned to me many times that I should try going gluten free because of my GERD and migraine headaches.....but I never did.

        Almost every morning I wake up with stomach cramps or nausea.  I call this "my digestive system waking up".  I've always figured it was from an empty stomach or too much stomach acid.  I thought everyone felt this way.  I do experience extreme fatigue some days but I have always attributed that to "being a mom".  My GERD is because I'm overweight and I get migraines because they run in my family.  I have a reason for every single one of my celiac symptoms.....and it is possible that those are the reasons for them.

      

     When I was off gluten I was pretty sure I had a gluten problem, when I first went back on gluten so I could be accurately tested I was feeling yucky within 24 with heartburn and headache and actually had liquid diarrhea in my pants.  At that point I was sure I had a gluten problem.  Now I'm on day 6 of eating gluten and the symptoms are not as severe (I am taking my acid reflux prescription again) so now I'm starting to doubt there was a problem.  Maybe I'm just imagining that I don't feel good.  I just want to do the test and get it over with.  Anyone else ever doubt how lousy they are actually feeling?

    

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pricklypear1971 Community Regular
pricklypear1971
Posted

I think we could fill a book with doubts.

And a second with things we thought were "normal".

Do what you need to do to figure out your health issues. Sounds like you're on the right track.

1desperateladysaved Proficient
1desperateladysaved
Posted

I keep trying to make my physicians tell me this really isn't happening to me.  Is that expressing enough doubt?  But 3 of them affirm that it is so.  I guess I need to stop doubting.

 

Maybe your body is too overwhelmed to keep sounding the alarm?  It sounds pretty clear to me that you have a gluten problem, Stormy.  You stay on board and figure it out.  Sorry, you are going through a challenge.  I hope you find definitive answers.

 

Diana

nvsmom Community Regular
nvsmom
Posted

I blew off my symptoms for my entire life after doctors told me that it was normal for me. They were wrong. Pain and discomfort is NOT normal. Try not to doubt yourself. You have definitely discovered that you have a gluten intolerance, now you just need to get blood tests to determine if it is celiac disease or the more common non-celiac gluten intolerance (NCGI).

Best wishes.

  • 2 weeks later...
NotMollyRingwald Apprentice
NotMollyRingwald
Posted

I go back and forth everyday...one minute thinking, "gluten is absolutely, without a doubt, 100%, poison to my system," and then an hour later, I'm thinking, "it's all in my head, I'm making things out worse than they are..." Blah blah blah blah blah. Ive always been a "innocent until proven guilty" kinda girl, so maybe this is my brain giving gluten the benefit of the doubt until I have more tests? Or maybe it's just good old fashioned denial. ;)

Hope you get answers soon!

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

I wasted 9 years 'mostly wheat free'. I had a hunch it might be gluten, but didn't research it or try the diet because it looked hard.

I still even get the odd stray thought maybe it's not gluten, despite a gluten challenge where I thought I might die, and a life totally transformed by being gluten-free.

All my doctors told me I was tired because I have young children. Except my current one, who tested me.

Gluten can affect the brain and moods too, so that may be affecting you. Does brain fog sound familiar?

The fact your brother is affected makes it more likely that you are too.

It's not so bad, honestly. My joints are way better now, and all kinds of symptoms have vanished.

Stick around and ask questions

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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

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      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
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      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

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      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm.  Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate. Oats, wheat, barley, soy, lentils, peas, chickpeas, rice, and buckwheat, almonds, apples, cherries, apricots, grapes, avocados, spinach, and pistachios.   
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      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
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