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Not Sure What To Do

frustratedandtired

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frustratedandtired Rookie
frustratedandtired
Posted

Hello all...

First off let me say I am glad to find this site. I have not been diagnosed with celiac and not sure if that is what my problems are from yet. The dr I saw Friday mentioned it and told me to find a primary dr that can accomidate short notice appt's. My ex also called me that evening to say that I needed to get tested for it without me even mentioning it to him. He had seen Elizabeth Hasselbeck on a show telling her story. I have been told nervous stomach, spastic colon, crohns (colonoscopy ruled it out) and IBS. I have always told them that I believe my problem is with my small intestines. I am always in pain. I have lost weight. At this point I eat about 6000 calories a day if not more just to maintain what I managed to put back on. I eat constantly. The headaches and the joint pain now are getting worse. My knuckles on my right hand are twice the size of my left. I'm weak and tired most of the time. The digestive issues .... well i wont go into those. I have had issues for years. When my symptons get extreme then I finally go to the dr. I get so frustrated not getting what I feel is a correct diagnosis I stop going. I feel like I'm wasting my time and my money for nothing. I am willing to try anything at this point. I will definately try the gluten free diet but from what I have read, I need to eat normal till tested. I will call the gastro dr and make a appt. I will let him know I would like to be tested and hopefully he will do so.

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Wolicki Enthusiast
Wolicki
Posted

Hello all...

First off let me say I am glad to find this site. I have not been diagnosed with celiac and not sure if that is what my problems are from yet. The dr I saw Friday mentioned it and told me to find a primary dr that can accomidate short notice appt's. My ex also called me that evening to say that I needed to get tested for it without me even mentioning it to him. He had seen Elizabeth Hasselbeck on a show telling her story. I have been told nervous stomach, spastic colon, crohns (colonoscopy ruled it out) and IBS. I have always told them that I believe my problem is with my small intestines. I am always in pain. I have lost weight. At this point I eat about 6000 calories a day if not more just to maintain what I managed to put back on. I eat constantly. The headaches and the joint pain now are getting worse. My knuckles on my right hand are twice the size of my left. I'm weak and tired most of the time. The digestive issues .... well i wont go into those. I have had issues for years. When my symptons get extreme then I finally go to the dr. I get so frustrated not getting what I feel is a correct diagnosis I stop going. I feel like I'm wasting my time and my money for nothing. I am willing to try anything at this point. I will definately try the gluten free diet but from what I have read, I need to eat normal till tested. I will call the gastro dr and make a appt. I will let him know I would like to be tested and hopefully he will do so.

Well, here's something to think about. There are SO many doctors who have no clue about Celiac. Many of us have gone from doctor to doctor, and suffered for years because no one knew. I was sent to a GI after 10 yrs of suffering and having a positive blood test, only to be told I don't have it because no D.

You can continue to go from doctor to doctor and remain frustrated. OR you can do a trial gluten free diet. Positive dietary result is proof of celiac or gluten intolerance. If you feel better on the gluten free diet, then you have your answer. There is no treatment other than the diet, so what do you have to lose? That's just MHO <_<

Janie

cricuteer Rookie
cricuteer
Posted

Well, here's something to think about. There are SO many doctors who have no clue about Celiac. Many of us have gone from doctor to doctor, and suffered for years because no one knew. I was sent to a GI after 10 yrs of suffering and having a positive blood test, only to be told I don't have it because no D.

You can continue to go from doctor to doctor and remain frustrated. OR you can do a trial gluten free diet. Positive dietary result is proof of celiac or gluten intolerance. If you feel better on the gluten free diet, then you have your answer. There is no treatment other than the diet, so what do you have to lose? That's just MHO <_<

Janie

This is also what I am doing! I thought after all I have read with the horror stories of people being misdiagnosed for years and doctors not truly understanding the condition that I needed to just do this on my own. Maybe it's not the right approach for everyone, but I'm a low-income person that can't afford to be tested for everything in the book. The first and only doctor I saw didn't even suggest testing of ANY sort, just said that I had IBS told me to eat more fiber and sent me on my way.

I'm in for the long-haul with my trial. Day 4, not feeling any better at this point but have already started losing weight.

frustratedandtired Rookie
frustratedandtired
Posted
  • Author

Thank you for your replies.

I have a appt Thursday with a new gastro dr. It is where my daughter recently went because she has had issues lately as well. When i made the appt I let them know I wanted to be tested for Celiac disease. I have been tested for everything else. Given the fact that my youngest daughter is having problems, and that I read somewhere that girls with Turners Syndrome are at higher risk as well and my oldest daughter having Turner's, I feel for me it is best to be tested if possible. I will do the gluten-free diet reguardless of what they say. I am willing to try anything at this point.

This may be TMI...I read where you may see a "few" drops of oil in your stools. I have been telling them for years about this and it is MUCH more than a few drops. It covers all the water in the toilet. Does IBS cause this? I wouldn't think so.

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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