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First Timer, Debating On Try Gluten Free Diet Or Go Get Tested For Gluten Intolerance Plus Food Allergies?


LuckyAtlas84

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LuckyAtlas84 Apprentice

I have to warn you all since this is awfully long message.

Hi all, this is pretty much my first time here. :blink: Anyway, Making long story short, I always have been thinking there is something wrong with me and it seem dont hit me until I read the article last week by Dr. Mark Hydamn. The article mentioned that there are many people are confused about the grains and certain grains are not good for many of us. He was talking about celiac's disease and gluten intolerance etc. that got me very curious....

here is my medical history.... :unsure:

When I was very young kid, My mom discovered that I breaks out in hives if i eat tomatoes. so Ban on tomatoes for me was established.

I was having trouble with my (BM), constantly constipation resulted in refusing to eat foods. mom took me to doctor and was told to take orange metacomcil everyday to help me to go. after while, it didnt work and doctor gave mom the pills that she has to stick up my butt to get my guts to move. it was torturing for me. :blink:

Teachers told my parents I was too distracted, hyperactive in class at age of five and asked them to take me in to be tested for ADHD and parents refused to and they thought i was just be high energtic kid and too much for teachers to handle me. <_<

Started getting sick frequently and got severely sick at age of nine. That landed me in hosptial for a week with penomenia and doctors discovered that I have asthma and constantly runny nose.

rapidly gained weight and more moody for few years. :(

at age of 12, came down with severe abdonminal pains and dizzy like heavy load on me and very sick to stomach, dehydrations. landed in hopstial for three days. rapidly lost weight after while. doctors wasnt sure if it was stomach virus or bad infections.

plus discovered i can eat tomatoes again without break out in hives but I started get weird round red spots that sizes of quarters and nickels. saw skin doctor and tested for ringworm and came back negative. never found cause for it and said i must have eczema...

at age of fifteen, rapidly gained weight and cycles were off the tracks and extremely moody, irribatity. and started have proarsis that tends show up in my crown hair line. (this is when i started my journey on see Gyno doctors and nurses)

(( didnt find cause and wanted put me on BC)) :huh:

at age of eighteen, still gaining weight and starting bloating. still have irregular cycles, ankles started swollen often. started have indisgnestions after eat certain foods.... :(

at age of 20, my knees started sore so badly that i couldnt bear weight on them ( i was only ten lbs overweight since age of 18. However, I decided to put myself on more raw veggie diet for couple of weeks to stop issues. I started eat veggies and walked and running more. I immediately feel so much better and more energtic like i was young kid. Knees pains went away :D

at age of 21, fell off the wagon with diet and excersis since started worked and college classes. severe reflux and indisgnestion show up and bloating with lot of cramps. that landed me in ER and got a Shot in butt and doctor said taht my iron is too low and high protein in my pee. that got doctors puzzled. :blink:

then, went to university and started different diet and got better low carb diet.... two yrs later, saw doctor and requested blood test to check why i still have irregular cycles since cant find what is wrong with me... said my thyroid are fine but little elevated. my cholerstal very low and healthy. little elevated in proteins. left at that point nothing was done... :huh:

finally graduated and went worked for two years. never seen doctor again until i decided to do something about my irregular cycles so went back to gyno and requested for a doctor and bought all medical records to doc and told her about ten years of no cuase for my irregular periods. more blood tests done for anything and found that I am close to have pre diabetic and disagnosed me with PCOS. and recommanded me to seek dietician for low carb diet instructions.

at age of 27, as now, I am still have all symptoms. most recently two weeks ago, I actually started baked more and made homemade pasta for chicken noodle veggie soup, rolls, lagsenesa, and cookies. I even started eat more sandwiches. that resulted in lot of classic symptoms especially reflux and constpiations. ironic is my irregular cycles became full blown very painful regular cycle after i decided went few days of gluten free diet since I was so sick with severe cramps. :blink:

I am at loss and I am starting suspects that my sister, which have severe IBS and still dont believe me, and I have the issues with food prehap more likely to gluten since our entire family are wheat freaks. I am only one that never really like to eat anything with bread, rolls, pastry and cakes much but still do eat pastas and crackers. :huh:

The real question is that Should I request for testing from primary care dcotor or get referral to GI for food allergies and maybe celiac panel. I has started eat gluten stuff again to make test more accurate since i have been read and research on this stuff.... do you guys and gals think i might have kind of intolerance to something? :(

Since I have been reading and found that people struggles with their doctors and lack of awareness tends make things much more complex... I am afaird if I go ahead with testing and would find nothing wrong with me and my family would say that its all in my head and be overreacting etc. at same time, I dont think so and does strongly think my sister and I have it plus prehap my mom and grandma have it too... grandma has to have colon surgery to remove some of small intestines and polys... my mom have diabetic with hair loss and tends get sick after eat high carb food.

ick!

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Bubba's Mom Enthusiast

Talk to your PCP and ask for a full Celiac blood test.

A lot of your symptoms *could* be Celiac, or gluten intolerance? It's not something most Dr.s think to test for.

Continue to eat gluten until your tests have been run.

Your PCP will tell you if you need to see a GI for the tests.

Good luck to you! I hope you get some answers.

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AVR1962 Collaborator

Could very well be celiac from what you have described. Do yourself a real big favor and ask to be tested, tell them you want this for your peace of mind. Warning however, tests are not real accurate unfortunately so people who get a negative think they don't have celiac when they actually do and they do not get better.

You could do a trial run for yourself and go off gluten for a couple months and see if you feel any different. Just remember in order to test for celiac or a gluten intolerance you have to be eating gluten for at least 2 months.

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GottaSki Mentor

Like many of us here you have had a very rough road with docs, but I suggest minimally you get a full celiac panel along with vitamins/minerals = all Bs,D,K,iron,ferritin,copper,potassium,zinc as even if you should have a negative celiac panel - extremely low nutrients levels can indicate that you are not absorbing nutrients.

I would like to add I am one of many with celiac disease that was misdiagnosed for many years because I was heavier than I should be for what I ate/activity level I had my entire life. The only period that I was thin was the decade from 12 to early 20s - as a teenager a was starving myself most of the time - not a healthy proposition for anyone,yet sadly it was my healthiest period of life - likely because I ate little to no gluten.

Get the bloodwork and then choose if you want to wait for results to start a strict gluten-free lifestyle. The reason I believe you should get bloodwork first is you verywell may test positive which will help you and your loved ones understand gluten removal is not choice, but necessity for you. Should your bloodwork be negative I also believe that you should do a strict gluten free trial for several months as the tests can be false negative.

I certainly wish I would have understood celiac disease/gluten intolerance when I was 27 rather than starting at 42!

Good luck - keep looking for answers :)

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LuckyAtlas84 Apprentice

thank you all for take your time to read my post. allright i will talk to my PCP and see about do blood test and see what is up etc. and go from that point.

for few days of gluten free diet, I does noticed that I was feeling better after avoiding eating anything that have gluten in it. like 90% free beside meat that was laced w gluten. I feel lot better and less indisgestion even my lower system was calm down for few days. I started eating gluten today again. i do noticed lot of upper stomach aches be perisistent achy but sorta of tolerable. :unsure:

Plus I wonder How i can convience my sister to get tested for gluten intolerance since she is disagnosed with severe IBS and does really seriously flares up when her cycle roll around every month. other wise, she does have to take a ibs medicine with Prisolence everyday. she said it do help but sometimes it dont work at all. Oh well, she think that, how do you spell this correctly?, I am being a Hypcontrinat about this. :blink:

I guess I just gonna go with the flow and see what is up with my pcp then go from that point. :huh:

I sometimes feel lack of support in figure what is going on. I am aware that not all results would be accurate and doctors might said that I am just having a reflux issue that sall...

So I m prepared to make a choice to change my diet even if doctors say i dont have issue with gluten... I always can go gluten free if It would help me wth reduce of my PCOs symptoms and less risk of becoming diabetic and prehap help me to drop more pounds easily.

oh well, thank you for your patience and advices. :)

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  • 2 weeks later...
sandiz Apprentice

go thru all the testing first. I am after 2 yrs back on gluten for the last 2 month for blood test and now a biopsy. I has been a battle with the doctor but so looking forward to finding out exactly what is going on and also getting back of gluten and all symptoms going away.

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LuckyAtlas84 Apprentice

go thru all the testing first. I am after 2 yrs back on gluten for the last 2 month for blood test and now a biopsy. I has been a battle with the doctor but so looking forward to finding out exactly what is going on and also getting back of gluten and all symptoms going away.

I am now in process of find right clinic and doctors that accepts my insurance and see what kind of tests that insurance would be able to cover. I just would not able to afford expensive testing if my insurance see it as unnesscary testing unless i go to ER for issues and request for it.

I just have to take steps but I am still eating some gluten but not severely like before. but still see the symptoms from eating gluten for three days in row and it jsut flare on me when i am feel emotional, stressed, and feel out of place. :(

still on the roll to find what is going on... family arent really supportive on this since they think its all in my head.

I made a discovery in my family's medical history. :blink: My own Father admitted that he used to be allergic to flour!!! it causes him to break out in hives and sneezing with watery eyes. mmmm, prehap he is celiac because he is in bathroom up to two or three times per day everyday for past ten years! it gotten worsen in past ten years than when i was youngster......

mmmm :huh:

will updates soon hopefully when i find doctors.

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