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I Have An Answer - Sort Of

sweetsailing

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sweetsailing Apprentice
sweetsailing
Posted

Hi all,

 

I am new to the group and this gluten free life.  I have had some significant issues for the last two years and seen countless doctors, been hospitalized 3 times, including having exploratory abdominal surgery - all without answers - at least until recently

 

I thought I would share my symptoms as it may help other, some symptoms I didn't even realized were related to gluten until I read some posts here.

 

Abdominal pain, bloating, severe stomach rumbling and general GI upset, the big D, gas, fluid retention in my ankles, anemia, muscle/joint pains/weakness (I would get frequent pulled/strained muscles, tendonitis, muscle spasms, etc all rather severe with very little cause of injury), nausea, osteopenia (diagnosed 2 years ago), weight loss, fatigue, brain fog, elevated liver enzymes briefly, early menopause (age 41), headaches and low grade fevers.  Oh and the really odd one - blood clot in my ovarian vein - Does anyone know if blood clots are associated with celiac?

 

After my 2 year saga, earlier this year I went partially gluten free (about 80%) I avoided all the obvious sources however didn't worrry about things like soy sauce or small ingredients on the label or cross contamination.

 

So, after all this I finally end up at Mayo clinic so they can figure out my "chronic abdominal pain" and they test me for celiac disease (first doctor to test me for celiac disease BTW in the 2 years I have been having problems).  I was strictly gluten free at the time of testing. 

 

DNA testing came back and I have double DQ2 (DQ2.5/DQ2.2).  I could have celiac disease.  However the antibody testing came back negative (likely since I was already gluten free at the time of testing)

 

At this point I am 5 weeks into being strictly gluten free and I feel a million times better than I did before.  There is no way that I am going back on gluten just to re-test or do a biopsy.  As far as I am concerned I have my answer and will remain gluten free (cuz I don't want to feel like that again)

 

Newbie (but learning quickly)

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1desperateladysaved Proficient
1desperateladysaved
Posted

I am so glad you are feeling better. 

 

Celiac and reproductive troubles are linked, but I am not sure of a blood clot in particular. 

 

I shared some of your symptoms:  Brain fog, fatigue, bloating were my 30+ year weights.  I also get fluid retention, up to 30 lbs!  I am feeling much better at 19 months gluten free.

 

D

Broomey13 Newbie
Broomey13
Posted

I am in almost the exact same boat, except I'm just shy of 4 years gluten free and when I wanted to get tested I couldn't find a doctor who even knew enough about the disease to be willing to test me.  They told me, I was more likely to be in an airplane crash than have celiac.  So finally, at 23 after an entire decade of rashes, mysterious and debilitating muscle and joint paint (and negative arthitis tests FOUR separate times), chronic D, bloating and cramping, severe bouts of acid reflux, ADHD and depression diagnosis and long term treatment for both, sporadic numbness in my hands/fingers/toes and horrible headaches, and a diagnosis of Fibromyalgia at 21 with an Rx for Lyrica (which is HORRIBLE and should never be prescribed long term), I decided doctors clearly didn't have the answer so I went gluten free all on my own and I have no doubts in my mind I'm a Celiac.  Every woman in my family has severe and chronic digestive and long term pain issues, although they think I'm just a hippy so they refuse to get tested or try the diet...  Anyway, I rarely look back and wish I had gotten that piece of paper validating what I already know, but tonight a close friend of mine insinuated that since a doctor never diagnosed me, it was probably all in my head.  People can be so insensitive and cruel.   It's really nice to hear there are people out there who are going through the same thing as I did/am, that piece of paper doesn't need to define us and the nay sayers are welcome to listen outside my bathroom door the day after I eat a few bites of some gluteny and delicious lol :)

cyclinglady Grand Master
cyclinglady
Posted

I was diagnosed formally in March, but my husband has been gluten free for 12 years based on advice from his GP and my allergist.   There's no way he's ever going to do a gluten challenge, as he knows that gluten makes him sick.  

 

One benefit of being diagnosed formally, is getting support from family and friends.  My husband hasn't always had that support.  

He's made the best of it and so can you!  Luckily for me, it was an easy transition going gluten free since I had been cooking for him all these years.  

 

Good luck to the both of you!  

MChase Apprentice
MChase
Posted

Glad you have a "sort of" answer.  I have not been tested (PCP sent me to GI to get tested, GI didn't test for Celiac), but have started a complete gluten free diet almost 2 weeks ago.  Most days I feel tons better, I can fall asleep, my psorasis (past 7 years) is clearing up, digestive issues almost gone, etc.

 

To the person that stated a diagnosis would be nice, I know what you mean.  My husband stated the other day that "You don't have it that bad", this is the not the first time he has said this.  When I asked what he meant, he said that he doesn't think I have it that bad.  I told him that I don't discuss my bathroom issues with him, so therefore he couldn't know how "bad" I actually have something.  I guess because I am not screaming in pain daily, he thinks it's no big deal.  I do get episodes where I am in excrutiating pain (like labor pains) for 6-10 hours with diarrhea, back pain, vomiting, etc ever 2-3 months (not counting the daily cramps, bathroom trips, etc).  A diagnosis would be nice, so I can have proof that it isn't all in my head. 

sweetsailing Apprentice
sweetsailing
Posted
  • Author

 

bloating were my 30+ year weights.  I also get fluid retention, up to 30 lbs!

 

I know what you mean.  I have lost 20lbs and it was all fluid retention.  I saw my nutritionist today, haven't seen her for about 6 months, and she didn't even recognize me!

 

Only person that ever minimized my symptoms or wondered if it was all in my head, was my primary physician, who I have now fired.  Don't let anyone tell you it's all in your head, we know differently!

 

As far as it not being "that bad", how would anyone else know what you are going through.  One of my favorite quotes - "Everyone you meet is fighting a battle you know nothing about.  Be Kind"

 

Actually, at first I didn't believe that all these "really bad" symptoms could actually be from gluten.  I really thought I had horrible disease (not to minimize celiac disease) but it just didn't seem like food or gluten could cause that bad of a reaction to me.  Of course, I know differently now and YES gluten can cause that bad of a reaction.

 

I think I had it alot longer than I even knew and now I think it's highly likely that my mom was an undiagnosed celiac.  I just thought randomly throwing up ran in my family LOL

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