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Could It Be...celiac Or Gluten Sensitivity?

mommysboys2

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mommysboys2 Rookie
mommysboys2
Posted

Wow! I just joined this site because I've been wondering if maybe I have an underlying condition for all this anxiety and fear that I've been dealing with for over a year now. I've been dealing with stomach problems for years now, and I've just always pawned it off on having a "sensitive stomach". During both my pregnancies I had horrendous heartburn and the second pregnancy was so bad that I didn't just have heartburn, but I had throat burn. It literally felt like I had a fireball melting in my throat. After my pregnancies it seemed to dissipate, but the past year I've been having it a lot more frequently, much like I did when I was pregnant. Anyway, let's just begin with September of 2009. I started feeling movement in my stomach...just like it feels when you are pregnant. It freaked me out. I felt it a lot...it would feel like swooshing and then it would feel like little kicks, etc. I took several pregnancy tests and they were negative, and I kept having my period, so I knew I wasn't pregnant. I didn't go to the doctor about it. I just tried to ignore it. 2 months later I started having bouts of fear wash over me. It scared me...I would be fine and then all of sudden I would get this cold sensation wash over me and I would get a funny taste in my mouth and I would feel frightened and isolated. I felt a feeling of doom. It would pass, and I would be fine for a while and then it would happen again. It was hit and miss until December 31, 2009. At that time, it came on hard and didn't let up at all. I literally thought I was losing my mind. I think I paced the entire day in fear. My nerves tore my stomach all up and I couldn't eat a thing. I ended up going to the ER and they diagnosed me with Gastritis (which is pretty much a nervous stomach) and they also did a CT scan on my abdomen. They didn't use dye though, which I could not understand because they said that if there was something wrong with my gallbladder or anything it would not show up without the dye. Why even do the CT Scan without dye. Ugghhh! So of course they come back saying they didn't see anything wrong with my stomach and did not know why I was feeling movement....Yeah because you didn't use dye you idiots. lol I get put on an antidepressant...zoloft. It took forever before I started feeling better on it, but then I relapsed and had another bad anxiety trip. They increased my dose...I struggled through the worst moments of my life, and eventually started feeling better, but I still will relapse a few weeks out of every month. So, that made me think that there is something else causing this severe anxiety than just a chemical imbalance. I have had a lot of other symptoms too. In addition to having a weak stomach and dealing with nausea and heartburn and indigestion a lot...I also have had terrible sleep issues this past year...a lot of headaches and full feelings in my head as well as the feeling of my brain actually moving or shivering inside my head. Overall I just don't feel well most of the time, but the anxiety is just awful. I've had my thyroid checked and it was fine. My Vitamin D was a little deficient, so I was put on a precription Vit. D2. For awhile there I was also having a lot of yeast infections and urinary tract infections, which is very uncommon for me. I started trying to research my condition to come up with some answers on my own. I came across Celiac disease and Gluten Sensitivity and I saw where a lot of people with this condition have anxiety, headaches, brain fog (which I have a lot of too), obviously stomach problems, and even brain zaps. Sorry this is so very long, but I just want someone's input on all of this who has Celiac and/or Gluten Sensitivity and may know some answers. Thanks so much.

Alicia

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Happyw5 Explorer
Happyw5
Posted

I know exactly what you mean about the feeling of a baby kicking...I had it! Sometimes when I would try to do situps I would have almost like a giant bubble on my side, I would have to stretch really fast to get it to go away (hard to explain) I have only been gluten free for a little over a month, but I am already feeling so much better... I was tested for celiac and it was negative, but it was positive for wheat allergy. I decided to go gluten free because I believe its still celiac.. With all my babies I had horrible heartburn (they did have a lot of hair though) but it continued after I had the baby too. I would stand over the toilet my mouth watering and just waiting to throw up but I couldn't I just suffered... I have always had a nervous stomach and was diagnosed with IBS, gerd and many other food allergies... I would get tests done if you can find a dr to do them, not knowing was hard for me, and it took a long time to find a dr that would listen. Even then he only did the one test. It took about two weeks for me to get used to the new lifestyle change, but it is already becoming second hand...Good luck in what you decide!!!

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      Hi Christiana, Many thanks for your response.  Interestingly, I too cannot eat wheat in France without feeling effects (much less than in the US, but won't indulge nonetheless).  I also understand children are screened for celiac in Italy prior to starting their education. Wise idea as it seems my grandson has the beginning symptoms (several celiacs in his dad's family), but parents continue to think he's just being difficult.  Argh.  There's a test I took that diagnosed gluten sensitivity in 2014 via Entero Labs, and am planning on having done again.  Truth be told, I'm hoping it's the bromine/additives/preservatives as I miss breads and pastas terribly when home here in the states!  Be well and here's to our guts healing ❤️
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    • deanna1ynne
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      By deanna1ynne · Posted

      And thank you for your encouragement. I am glad that her body is doing a good job fighting it. I also just want clarity for her moving forwards. She was only 6 for the last round of testing and she's 10 now, so I'm also hoping that makes a difference. It was weird during her last round of testing though, because right before her biopsy, we'd upped her gluten intake by giving her biscuits made from straight up vital wheat gluten, and her labs actually normalized slightly (lower ttg and her ema went negative). Bodies just do weird things sometimes! lol
    • deanna1ynne
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      By deanna1ynne · Posted

      The first negative biopsy in 2021 just said "no pathological change" for all the samples, and the second one in 2022 said "Duodenal mucosa with mild reactive change (focal foveolar metaplasia) and preserved villous architecture." So I think Marsh score 0 in both cases, though it's not actually written in the pathology reports. I'm really hoping to get a clear positive result this time, just for her sake.  
    • Wends
      Blood results

      By Wends · Posted

      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
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