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New Member.. Celiac?

JC318

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JC318 Newbie
JC318
Posted

Hello,

I am new to the forum and am looking for support and wisdom from others. My aunt was recently diagnosed with Celiac and out of curiosity I googled the symptoms and was amazed at how many of them I seemed to have.I wanted to get some opinions of other people to see what their take on my symptoms are. My most prevalent symptoms over the last ten years at least are depression, irritability, distractability, etc. I am currently diagnosed with a mood disorder and ADD both of which were diagnosed in adulthood but were definitely present in early childhood. I also developed a rash about a year ago which my PCP says is mild eczema. The worst of it is at the hairline of my neck but also my torso. I am also nauseous all the time, I always have been but it seems worse now. I am extremely sensitive to smells and if a smell is unpleasant to me I really feel like I might throw up. I have a headache just about everyday and I am dead tired all the time. I have gained at least 80 pounds over the last 8 years. I was always very thin but gradually I gained weight over the years. It seems like everything I eat sends me straight to the bathroom. And.. I just dont feel well, ever! I went to my PCP to ask about getting tested. I explained that since my aunt was diagnosed it seemed like getting tested was warranted. After the eye roll she ran blood work. The bloodwork can back negative but my iron was low. I started taking an iron supplement and after a week of taking them i became so sick to my stomach I was actually throwing up from it. I went to see a GI and he said that while my gluten test was low my IGA antibodies were very low which concerned him. He pressed on my stomach which was painful and for a few days after I had sharp pain in my lower right side. I am scheduled for an endoscopy next month so hopefully that will tell me something. Although I do not want to be diagnosed with Celiac at least if I am I can finally tell people that I am not crazy about the things I am complaining about. Of course I take medication for my psych symptoms so as soon as a doctor hears that they stop listening to anything else I have to say. Can anyone shed any light on any of this? Thank you.

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ravenwoodglass Mentor
ravenwoodglass
Posted

You do sound like your in the right place. Keep eating gluten until after your endo and then you can give the diet a good strict try. Kudos to your doctor for realizing that low total IGA causes false negatives on the testing. Endos can have false negatives also. The diet has relieved depression and other mental health issues for quite a few of us. It also isn't unusual for doctors to tell us it is 'all in your head' if they can't figure out what is going on. I hope the endo has clear results for you but even if it doesn't a good strict trial of the diet is a really good idea.

Dixiebell Contributor
Dixiebell
Posted

Hi JC318.

Keep eating a gluten filled diet until after the endo. is done.

Did your Dr. check any other vitamin levels or your thyroid? It would be a good idea to check those too.

Your aunt was diagnosed so it is in your family. After you are done with the endo, if it were me, I would go ahead and start gluten-free. If gluten is your problem you should start to see some positive results, hopefully within three months + -. Time frames are different for everyone so don't give up.

depression, irritability, distractability, a headache just about everyday and I am dead tired all the time, I was always very thin but gradually I gained weight over the years

I have had these problems almost all my life and since eating gluten-free and getting my vit. levels up, I feel so much better, still not 100% yet, but way better. The weight issue for me has been a prob. With my first child I lost all the weight, I gained a lot, with her. My second, I gained the same with him but it has not wanted to go away. So hopefully since I now have energy again I will be able to get rid of it.

JC318 Newbie
JC318
Posted
  • Author

Thank you for the responses. I have had my thyroid checked and it came back normal. My grandmother was tested and it was determined that she had an under active thyroid so I was sure to have that tested. This is my mother's mother (thyroid) and my mother's sister who has celiac so its at least on one side of the family. I do plan on continuing to eat gluten until after the endo, in fact I have given up on eating healthy to lose weight at this point and am just eating a lot of crap so that it does not affect the results. I figure if I am going to feel like crap regardless of what I eat I might as well eat the food I want. Maybe that is a negative outlook, but I am feeling negative about the whole thing. Hopefully the results will be conclusive

cassP Contributor
cassP
Posted

good luck with your endoscopy. like posters have said above- if i were you, as soon as you're done with the endo- try the diet- and know it can take some time to feel better from it.

sounds like your doctor may have only tested for 2 things on your celiac panel: an antibody ?? (was it ttg or antigliadin?), and your Total Iga Serum. and it sounds like you were LOW on your Iga- which means ANY antibody test you have done in the Iga form ( be it TTG, or Antigliadin)- will be innaccurate. i'm low on Iga too (which is fairly common in Celiacs), and my test results were very low .

i know that it's classic for those with Celiac to drop weight while on gluten and have constant "D".. but i was always 10-30lbs heavier while consuming gluten.. always bloated with "C" & "D".

and while my depression and anxiety improved after going gluten free- it wasnt untill i was put on the proper meds for my hypothyroid that i really began to see mental change- so always keep up with that testing too. thyroid issues are so intertwined with Gluten Intolerance.

JC318 Newbie
JC318
Posted
  • Author

Thanks for the reply. I am still new to all the testing lingo, all I know is that he said my IGA was very low and the same with my iron. He said after the endo he would run a full celiac panel. I am thankful that my GI doctor seems to be very understanding and took me seriously especially when I told him it is in my family. After getting several eye rolls from doctors it was nice to see that someone was taking it seriously. I just wish the endo wasn't so far away, it isn't until March.

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