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Confused


KayJay

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KayJay Enthusiast

I am confused about a few things and looking for some answers.

Is Celiac an autoimmune disease? I don't think I actually have celiac just gluten intolerance according to Dr. Fine. I have never had a biopsy but have been gluten-free for 3 years now and doing fine until recently.

I read on here that if you have one autoimmune disease you are at a higher risk of developing more. 4 years ago when I was really sick they did blood test and thought I had Lupus. I know that is a common mistake right?

Well, I have been fine but recently got the flu. I think that triggered something and I have no idea what. I have had zero energy and can't get rid of a low grade fever even with the antibiotics I am on. I went to the doctor and he is testing my thyroid and blood counts but I have little hope of them finding anything. It just took so long to get diagnosed with this I have little faith in Doctors sometimes. (He even had little faith in finding anything) I guess I should mention that I have gained 11 pounds (in the last 7 months!) despite eating right and working out :angry:

Help! I don't know what is going on with me or who to turn to. I have an 18 month old and I feel like I am being a horrible mother to her because I have absolutely no energy to play :(


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wowzer Community Regular

Celiac is an autoimmune disease and so is thyroid. I don't have an official celiac diagnosis. I have been tested for lupus, herpes, all sorts of things. All my tests came out negative. I have had so many extremely itchy rashes and finally when I saw DH a light bulb came on. I went gluten free the beginning of the year and it has helped a lot of my symptoms. I still am missing something, but hopefully I'll figure it out. It sure is frustrating to feel awful. My husband thinks I make these things up. I have a little sister whom was diagnosed with celiac at a year. She has a long list of the autoimmune disorders going. I hope you find your answer soon.

RiceGuy Collaborator

When I first went gluten-free, it took about 6 months to really begin to see some changes. Once that started, I knew I was on the right track. However, like many others, over time other things began creeping up. Thanks to the member on this board, I did finally figure out some of the major ones. So now I take a sublingual methylcobalamin (vitamin B12) supplement, and also a magnesium supplement. It wouldn't surprise me if I find it necessary to supplement other nutrients, but I'm hopeful that won't be the case. I also had to cut out all dairy, though I wasn't eating much of it anyway. Getting more proteins from beans and grains also has helped.

One allergy which did surface was to corn. I think I've narrowed it down to GMO varieties, because organic ones and things like popping corn are still generally ok. I get cold-like symptoms from the ones that bother me. Nightshades also seem to bother me the last I tried any, but I don't consider the reaction to be an allergy. Rather, it's more of an inability on the part of my digestive system to filter out the neurotoxin which they contain. It happens to be toxic to everyone, but most people have a high enough tolerance such that the usual amounts consumed don't create enough of an impact to get noticed.

As for your fever, that I know is supposed to indicate some kind of effort by the immune system to kill off whatever microbial gremlin is bugging the body. I do imagine it's quite possible for a fever to be caused by other things, but I've not researched it. Sometimes though, antibiotics can do more harm than good, and I do know from experience how they can really mess with the body in all sorts of ways. So I'd caution about taking such things, or any drug for that matter.

Some other things which have plagued a number of the members here are canola and MSG. Though I haven't seen fever as being related to MSG, it does cause migraines for many. Apparently it can be in vaccines too. Here's a link to some good Open Original Shared Link for anyone who want to look into it.

I wish I had some definitive answers for you, but hopefully between all the replies and your own research, you'll find the solutions you seek.

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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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