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Results Of Late Or No Treatment


Jala

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Jala Newbie

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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plantime Contributor

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

Guest jhmom

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.

Karina Explorer

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......

Jala Newbie

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.

LUAP Newbie

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

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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