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Emilyeagleowl

Mysterious symptoms don't know if it could be celiacs

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Hi guys. 

I'm new here and I don't know what else to do but I can't go on like this. I have a  problem and I am wondering if anyone else has experienced this. In September I started to feel really sick and have a pain in the lower right side of my stomach. The Dr thought it was appendicitis and I was sent to A&E because the pain came on suddenly and escalated. It turned out not to be appendicitis, but they thought it was an ovarian cyst. It wasn't that either. I went to the DR recently because the pain is still there, I and I felt sick and like utter crap a lot of the time. I had a blood and stool test and it came back negative for several types of cancer and celiacs. However I have been keeping a food diary and the things that irritate my stomach most are bread, pasta, pastries which have gluten in them but other things don't make me feel sick at all. I read that you can still have celiacs and have a negative test result. Has anyone had this issue? I have noticed that I am tired all the time. I am usually tired in the winter and my mum bought me a sunlamp but its not helping; I also feel sick particularly after eating, my stomach hurts frequently  lower right hand side and I have tummy troubles (mostly pooping too much) . The funny thing is that the doctor asked me had I noticed I had lost weight without trying. I said no because my flatmate and I don't have scales in our house; but my jeans are getting loser and I am eating a lot of chocolate and carbs like pasta. I also have naturally sort of olive toned skin and my flatmate says I go pale and look sick. What do you guys think? Should I go back to the Drs after Christmas? Some of my  cousins have problems with gluten (and possibly my Dad and Granddad) so it's a possibility and I also tend to hurl after one pint of beer. It's really wrecking my life and can't carry on feeling this rubbish all the time. 

Thanks to any one who reads this. 

Emily

Edited by Emilyeagleowl
Forgot to add some info

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Hi Emily,

Welcome to the forum! :)

You may have celiac disease.  Do you know what tests were done for it?  Often the only test done is the ttg IgA, which is a common screening test.  But it is not the only antibody test available, and should not be considered definitive if there are symptoms that point to celiac disease.  The DGP IgA and DGP IgG antibody tests are also useful.  Sometimes people are only positive on one antibody test type.

Remember you have to keep eating gluten until all testing is done, which usually includes an endoscopy at some point.  There is also a gene test the can do but it only proves you have a possibility of developing celiac, not that you have celiac.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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I would say keep eating it at least a bit each day and go see about getting a full celiac panel done and ask about a endoscope and biopsy test.


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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Hi guys , 

Thank you for answering and thanks for the warm welcome ! I feel so much better that I'm not alone with this. And yes it was the ttg IgA antibodies test  and faecal cal protein. They were checking for cancers as well so I guess what that does make sense that they weren't looking for celiac as the main candidate. I would rather they rule out cancer first. I will carry on with my usual diet as suggested and I have been keeping a food diary and noting when I feel sick so hopefully that will convince the Dr. Did you guys have any joint pain? Like totally random, non-injury associated pain? 

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Hi Emily,

I had joint pain years ago  that went away when I eliminated nightshades.  It took a month or more for the joint pain to go away though.  I had joint pain in both shoulders and both knees.  It wasn't related to injuries in anyway.  More recently I had joint pain return which improved when I upped my Vitamin D intake.  I've been gluten-free for 12 years now.  I also now have some joint pain in one shoulder I managed to injure, but that is definitely not diet related.

I have a brother who's a pain too, but that's life! :) 


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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