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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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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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