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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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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
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      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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