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The Likelihood Of Me Having Celiac Disease?
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I have suspected I have celiac disease (or at the very least am gluten-intolerant) for several years. I know very little about this disease and the more I learn the more confused I get. There is still so much more to learn and I feel overwhelmed reading about it. A few years ago, I read Elisabeth Hasslebeck’s book (I think it’s called the gluten-free Diet?) and was pretty convinced I had this disease. I just thought ok well one day I will get tested for it and deal with it then. Honestly, I did not want to have it. I read about all that you CANNOT eat and it sounded awful. So, I just put it out of my mind and thought to myself I probably don’t have it anyway.

 

I have suffered from gastrointestinal problems since I can remember. My main issues are constipation, bloating, horrible abdominal pains, and every now and then nausea. I sometimes feel a sharp pain under my left rib cage. Sometimes the bloating and uncomfortable abdominal pain hurts so bad it hurts to move and I have to unbutton my jeans in order to ease the pain. Sometimes I have painful diarrhea after a particularily fatty meaI. I have tried loading up on fiber and water to help with the constipation. I have tried drinking Miralax. I have eaten prunes, drank prune juice, eaten 25 grams of fiber a day (along with lots of water), drank green smoothies, and just about all that is suggested. Nothing ever helps. I have accepted that this is just how my body is and I will “go when I go”. If I go days without a bowel movement I will take a laxative, which helps, although there have been times it didn’t. I have also used suppositories and enemas (both working most of the time, however, there have been times when no bowel movement was produced).  Last year I was having shooting, stabbing pains in my tummy and a friend rushed to the store to get an enema. I layed on the bathroom floor until she came back because it hurt to move. I am currently suffering from tummy issues (as usual) and today I randomly looked celiac up online again. I am once again convinced I have this. I just discovered that iron-deficiency anemia is often linked to celiac disease and that Candida is linked to celiac disease as well. Here is some background info:

 

1.       Had surgery when I was 2 years old due to a hernia. My mom says that from then on I had issues with my bowels. I have read that stress or surgery can trigger or cause celiac disease.

2.       Had bad yeast infections  since I was a little girl. As an adult I asked the gyno what made me get them so often and she told me that some women are just more prone to them.

3.       Diagnosed with IBS when I was 18 years old.

4.       Diagnosed with an auto-immune disease when I was 20 years old. (It is a rare disease called henoch-scholein purpura and attacks the kidneys)

5.       Diagnosed with hypothyroidism last fall. The doctor told me she wanted to wait and see if my thyroid would get better on its own because once I start the hormone replacement I will have to take it forever.

6.       Diagnosed with iron-deficiency anemia and started on Ferro-sequels, a potent iron supplement. I was happy to discover I was anemic because I was horribly fatigued and it gave me an explanation as to why. (I was also deficient in vitamin D, but I think this is pretty common?)

7.       Auto-immune diseases run in my family (my grandma has Addison’s disease, cousin has thyroid disease, multiple sclerosis, etc)

 

Can anyone relate to this or give me any insight? What is the likelihood that I have celiac disease? I have not lost weight, if anything I cannot lose weight. From what I've read constipation isn't common with celiac, it is usually the opposite (having to go too much). I am going to have blood work done in a few weeks and am thinking about requesting to be tested for celiac disease. My only reservation is the cost of the additional tests (I do not have insurance and am paying out of pocket). Also, from what I have read, false-negatives are common for celiac disease so should I even bother with spending money on the test right now? Should I just go gluten-free and see how I feel? I know that if I should NOT go gluten-free if I do decide to have the test done, as this can affect the accuracy of the results. I will definitely have the test done at some point, just trying to figure out if I should pay out of pocket right now or wait a year until I have insurance.  Any suggestions would be extremely appreciated. The more I learn about celiac disease the more questions I have. I know there is so much more for me to learn and I will continue to do research.

 

Thank you!

Meagan

 

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Meagan, welcome to the awesome people club!

There is a string of this you listed that do point to celiac (family AI history, hypothyroid yourself, anemia yourself, Vit D deficiency-common yes, but celiac can be the reason behind it check blood work for other deficiencies, and a few of your symptoms). As for your symptoms, some can be from a "picky-back" problem, but there are over 300 symptoms of celiac, and everyone's experience with them is different. Here is a link to the University of Chicago's Celiac Center's list of symptoms:

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf

As for testing out of pocket, that's where I'm at right now. I have insurance, but they don't want to pay because of no family history of celiac, even though AI is common in my family. Here is what was told to me about the tests, and trying to choose which one to pay out of pocket for:

"This report shows the sensitivities of the various tests on page 12: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

According to that report, the DGP IgA is the most sensitive with a sensitivity of 82-96% - meaning it could miss 4-18% of all celiacs taking that test."

From my understanding, the most common false negative is from the IgA tests, so if you choose to do an IgA test, make sure that you get a "IgA complete syrum" as that can determine if a negative is likely false. IgG tests can be less accurate, but will remove the need for a control test. Speak with your doctor and ask what they would want to be qualifying for a Dx, as some doctors want the whole panel and endoscopy, and some may accept family history, your history, and 1 or 2 blood tests showing positive.

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Can anyone relate to this or give me any insight? What is the likelihood that I have celiac disease? I have not lost weight, if anything I cannot lose weight. From what I've read constipation isn't common with celiac, it is usually the opposite (having to go too much). I am going to have blood work done in a few weeks and am thinking about requesting to be tested for celiac disease. My only reservation is the cost of the additional tests (I do not have insurance and am paying out of pocket). Also, from what I have read, false-negatives are common for celiac disease so should I even bother with spending money on the test right now? Should I just go gluten-free and see how I feel? I know that if I should NOT go gluten-free if I do decide to have the test done, as this can affect the accuracy of the results. I will definitely have the test done at some point, just trying to figure out if I should pay out of pocket right now or wait a year until I have insurance.  Any suggestions would be extremely appreciated. The more I learn about celiac disease the more questions I have. I know there is so much more for me to learn and I will continue to do research.

 

Thank you!

Meagan

Welcome to the boards.  :)

 

Your story sounds SO much like mine.  I never had D but instead had constant C, and the way you describe the bloating and pain sounds almost identical to what I experienced for years prior to dignososis. I remember being on vacation at a beach and rejoicing because I was finally able to go to the bathroom after well over a week of no luck. I also have thyroiditis (and I don't know why your doctor said to wait - you can stop taking thyroid replacements if the need for it goes down) and another autoimmune disease that I developed around age 20. I even read the gluten-free Diet by Hasselbeck, and decided to dismiss it (denial) about a year before I finally tested myself. so yes, I can definitely relate.

 

I think there is a good chance that you have celiac disease. I think you should get tested now if possible and affordable because some find that the 8-12 week gluten challenge is impossible to complete after eating gluten-free for a while. A minority of people end up with serious health problems after trying a gluten challenge, so I would advise you to try and test now rather than make yourself sick for a few months in the future.

 

If you do test, it is helpful to get as many tests as possible done because false negatives can happen.  These are the tests:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG
  • EMA IgA (usually only positive when the tTG IgA is positive)
  • total serum IgA (a control test needed if you do any IgA based tests - 5% of celiacs are deficient in IgA which would make all IgA based tests falsely negative)
  • AGA IgA and AGA IgG (older and less reliable tests that I would skip if you are paying)

 

If you need to pick and choose your tests, I would pick the tTG IgA and IgG, and the DGP IgA and IgG, as well as the total serum IgA.  Some people are positive in only the IgG or IgA based tests, so it is important to get both, and it is not uncommon to be positive in either  the tTG or DGP tests but not in both.

 

If you really can't swing the cost of the tests right now, by all means go gluten-free but keep a food and symptoms journal of how the gluten-free diet is affecting you. Be sure to be patient as some symptoms can take months and months to improve - it took about 9 months for my C to finally sort itself out.

 

Best of luck in whatever you decide to do.  :)

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I decided not to wait...your history is much like mine, although my early Immune Disorders are different.  My niece was diagnosed, and I finally checked it out after hearing how much better she was in only a bit over a year...Fibromyalgia gone, pain, anxiety and depression, intestines doing well after only a year or so gluten-free.  I'm already on Medicare from a disability, so getting tested is easy...it is getting free of the interference in your life that bothers me, and at 59 I am alone, and no one to hurt by not getting diagnosed formally. 

 

I am having private testing done for my own information...$1,047 for all sentivities and half the gene panel at EnteroLabs...not looking for a diagnosis, but for what I am already putting out antibodies for so that I have the best knowledge of what foods to avoid.  I've been gluten free for 5 days, and started feeling better yesterday...brain fog cleared, and am in persistantly good spirits with more energy!

 

BUT - I do not recommend this for anyone who has not already been told by their Doctors there is nothing else that they can do.  Sure, I can get tested, but what is the point?  I still have to do the work. 

 

Not getting tested can mess you up for your future medical treatments and insurance, so be tested if at all possible before you go off gluten, because it's like taking poison again to re-glute and get tested later.

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