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Results Of Late Or No Treatment
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6 posts in this topic

I am 38 and just found out I have a wheat intolerance. I have not been tested for Celiac. I can see the progression of my symptoms from aversion to food, to buckling over cramping, to facial and eye swelling, to year long rounds of diarrhea, to brain fog, to chronic fatigue and more. All my symptoms immediately alleviated when I stopped eating gluten. I no longer have to read the same piece of paper 5 times, and my severe IBS is gone. I feel like a million bucks.

I know this is a hereditary disease and my father died of multiple sclerosis by age 43. I have also read about the links between celiac and MS. Does anyone know what happens if you are not treated? In particular, has anyone actually experienced or seen a link to MS?

FYI, my 11 year old nephew has already been in the emergency room twice for severe abdominal cramping and no detectable cause.

Thanks, Jala.

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I don't know about the link to MS, but the untreated celiac dies an early, painful death.

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Hi Jala, first I would like to say, I am glad you are feeling better after going Wheat Free. I also sorry to hear of your loss, 43 is very young to pass away.

I found these and wanted to share them with you...

MS and Celiac Disease

Here is also another link Diseases that may be linked to Celiac

You take care of yourself and hang in there! God Bless you and your family.

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Interesting. Last year I had an MRI of the brain to check for MS as I had many MS symtoms. It was negative. I hadn't a clue as to what celiac disease was or what it involved and now I am diagnosed. I have had symtpoms a long time--probably all my life really. I hope I don't have something new to worry about now. I am gluten-free now, but only for two days so far. I know the more I learn about this disease the more motivated I am to do what I need to do. My advice is to find out for sure if you have it, or just go all the way gluten-free since you know you can't have wheat now anyway. Sorry I just checked and you are gluten-free--good :lol:

I am learning not to get carried away with all the possibilities of this disease because if I did I would be scared all the time...we have to live our lives and take care of our bodies. I am so sorry about your father, and that you have to deal with that in your family medical history, but worry can be damaging too......

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Many thanks for the input. I worry about those who don't find out in time. Hope others can benefit from your info as well. Jala.

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THANK YOU STACIE FOR THE LINKS, IT ANSWERS SOME OF MY QUESTIONS ;)

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    • Just wanted to add, that when my friends or family want to eat at a restaurant that I am not sure about, I bring some snacks and then order a drink.  It is all about the company, not the food.  
    • Based on the information you have posted today, the most likely probable reason for your being ill is that you are getting glutened!  Here is a biggie....does your hubby brush his teeth prior to kissing you?  Seriously, it can happen, but going out to eat a lot.....that can be just as bad!  We eat at restaurants that have been approved by celiacs (websites).  Just because that offer a gluten free menu does not mean that they understand about cross contamination.  
    • I got glutened last summer.  Heck, I do not even know what glutened me, but I suspect two products that my gluten-free hubby never consumed (he is my canary).  My symptoms were so different from when I was diagnosed (just had anemia then).  My GI thought I had SIBO or something else, but I asked for a celiac panel.  Yep, I had been Glutened!  Took me three months to recover and another three to regain lost weight.  Yeah, I picked up another health issue on the way (hives, rashes, swelling, itching, ab pain, vomiting, and fainting.)   I did not eat out for one year!  Only this summer, I did.  Was it worth the risk?  You bet!  Three weeks in Europe.  Fortunately,  7 days was on a cruise and Celebrity did a great job.  Italy was so celiac-savvy and I did my research and found places recommended by other celiacs in Spain, France and Poland.  If not, we bought cold food at the market and had a picnic.   I am home.  Will I eat out?  Probably not.  I have a busy Fall ahead of me (High School....football, marching band, volunteer positions, house projects, and work).  I can not afford to be sick.   Ah, I will eat out this Thanksgiving break.  My favorite restaurant is 100% gluten free in Tucson, AZ.   Maybe I will discover another gluten-free restaurant closer to home! 
    • I do est out occasionally - but not indiscriminately.  I am careful to choose places that under stand gluten free.  And places that the food is naturally gluten-free, helps, too.  Celiacs can't just eat something that should be gluten-free and hope it is.  We have to use some common sense and ask questions.  
    • You are right that the next step is an endoscopy, which still is the "gold standard" in diagnosing celiac disease.   However, for various reasons the endoscopy is not done because financial contraints  or long wait times (up to a year!), or too ill to proceed.   You have two positives.  You only need one positive to move forward.    The TTg tests  do not need to be positive for a diagnosis (which requires a positive on an antibodies test which you had and an endoscopy).  My TTg tests were negative and I only had a positive on the DGP IGA, yet biopsies revealed a Marsh Stage IIIB (moderate to severe damage. http://www.cureceliacdisease.org/screening/ Unless your PCP is a celiac expert (unlikely), I would insist on a GI consult.   Please find one who is celiac-savvy.   keep eating gluten daily until all testing is complete (biopsies done).  You never know if lab results are going to get lost.  Besides any celiac testing requires the patient to be on a gluten diet.  In the meantime, keep on researching.  Only YOU can be your best health advocate!  
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