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New Symptoms... Also, Celiac With Soy Or Anxiety Issues, Anyone?


amandanoelle889

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amandanoelle889 Newbie

Spring of last year, I pushed my doctor for Celiac testing, and received these results:

T Transglutaminase IGA | RANGE: 0-15 U/mL | RESULT: 9 U/mL (negative)

T Transglutaminase IGG | RANGE: 0-15 U/mL | RESULT: 3 U/mL (negative)

My symptoms at the time (as well as currently) include:

* Recurring bloating and abdominal pain

* Excessive flatulence

* Lactose Intolerance

* Chronic diarrhea and constipation

* Occasional pale, foul-smelling stool

* Joint pain (I also have mild Scoliosis)

* behavior changes/depression/irritability

* Fatigue, weakness, lack of energy

* Haven't mensturated for about a year (gyno convinced it's from my BC)

* Diagnosed with Irritable Bowel Syndrome (IBS)

* Mild anxiety and concentration issues

After very kurt, closed-minded responses from both my general practitioner and gasteroenterologist, and my first year of college beginning, I gave up on further testing for the time being and decided to just "deal."

Since, my symptoms have increased. Now, I also exhibit frequent wooziness/lightheadedness/feeling "out of it" and slight loss of balance (sometimes directly after eating gluten products,) sharp, stabbing chest pains under my left rib as well as over my heart (chalked up to anxiety, I've been put on xanax, which has helped slightly,) a frequent dull tightness in my chest, increased headaches, almost instant dull pain in my lower abdomen when I lay on my stomach, and increased sensitivity to food allergies. I've also been reacting to soy more lately, which I am not allergic to.

I have recently gotten referred to a new gasteroenterologist, and am pushing for another IGA and IGG test to see if my levels have risen. After which, I figure I will start a gluten-free diet, and go from there.

My friend was recently diagnosed Celiac, and has almost completely mirrored my symptoms, especially causing me to seek further testing. Anyone else out there reacting with anxiety/chest pains or soy issues?


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stephharjo Rookie

I also tested negative and had a lot of the same symptoms you have, especially the pain in my side after many misdiagnosis' a gall bladder removal that did not help at all I finally did a gluten free diet on my own. Even my newest gastro said oh its IBS here's a laxative. I said no. The diet has made a world of difference it's so great. While I have a long way to go as I've been dealing with this for many years and I have also reacted to eggs shortly after going gluten free I am certain that gluten was the problem. You don't need a medical test to tell you that gluten is a problem so don't feel bad if it's still negative. Try the diet religiously and gauge how you feel every step of the way. I felt so much better after only a few days and it now been 3 weeks and I'm seeing more and more differences in my health everyday. Main stream doctors have very closed minds when it comes to celiac and gluten intolerances I recommend finding a place in your area that specializes in celiac and gluten intolerance. I have found one in California I would like to go to but I live in remote Alaska so it might be a while before I can get there. You might have a better chance though. I went to a general dietician but her knowledge was very limited as well. Good luck and when all else fails, trust your instincts they are more accurate then any medical tests. Good luck!

Bubba's Mom Enthusiast

I'm 6 weeks off gluten and have been getting chest pains, anxiety, trouble sleeping..and on and on. I've found that a lot of these symptoms are from low calcium, low magnesium, low potassium, and low phosphorous levels in one's system.

This could be due to villi damage from gluten(like in my case) or poor diet, or both.

Whatever you decide about testing, it would be a good idea to try suppliments or foods rich in these nutrients to see if you feel better?

Good luck!

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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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