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Well...it's Been A While, But I'm Miserable :(


jamiecasabellameeks

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jamiecasabellameeks Apprentice

Okay, so it's been a while since I've been on here...mostly because I have been feeling good until the past couple months...So, here is my story, and I'm hoping someone can help...I was diagnosed via blood work then biopsy in February 2013. I've been gluten free since biopsy...with the exception of accidental glistenings and CC. After approximately 2 months on the diet I began feeling AMAZING! I didn't know what to do with all the new energy! Then, I think I began getting a little too "comfortable". I began eating lots of junk really...chips (that were not listed as gluten-free even though no obvious ingredients indicated gluten), chocolate, candy...JUNK! I was also eating a ton of frozen steamer vegetables, which I later found out that that brand states "they can not guarantee that food was not cooked on same line as wheat products". I eat a LOT of baked potatoes (maybe I have a problem with those??) Anyway...I now have proclaimed to not eat ANYTHING unless it is says gluten-free on ingredients. But I still feel so bad. My energy level is virtually non-existent. And it's worse late afternoon/night but not sure why? My joints just ache so bad and the fog/depression set in at night too...Stomach problems aren't my main issue right now. I just need some strength and for my muscles and joints to feel better. I would love to hear anyone's story and to hear suggestions?? Like vitamins you take and love, etc?? I might add I have a 3 year old, 2 year old and 1 year old...I need a "pick me up".


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jamiecasabellameeks Apprentice

*glutenings not *glistenings LOL...Stupid autocorrect on my phone.

HumanDecency Contributor

When was the last time you were tested for deficiencies? What does your result panel look like? 

 

I would cut out that junk. At least for a few more months and then slowly introduce it as you know you can tolerate it. I know it sucks and you probably want to get back to a normal life as soon as possible but it's hard to say what could be causing you problems in all that junk. If you feel better off of it then it should probably go for now. I take a strong multi-vitamin with iron (pre-natal) but I wouldn't go taking anything unless you have a valid reason. Do you have a doc you see regularly? He can check your levels and tell you what you need or what you're missing. 

 

I hope you feel better and I know CC and glutenings suck. 

Take care, my friend. 

mamaw Community Regular

Just  get  back on  tract, clean  wholesome  gluten-free  foods. And  stick to it....its okay  to  have  a few  snacks &  sweets  now &  then  as  a  treat  but it  isn't  good , only for  weight  gain  to  eat  these  type  of  foods  gluten free or  not...

Think  WILLPOWER.......

feel better  soon....

jamiecasabellameeks Apprentice

Hey I haven't been tested for deficiencies in approx 2 months, but I was still a little vitamin D deficient at that time...it's just so hard to pinpoint everything, which is so frustrating...and non-Celiacs just don't understand...I'm dealing with that too. I do have a doc I'm seeing...but I am his first celiac patient. Awesome! NE Mississippi is quite behind...

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
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    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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