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Please Read My Symptoms, Give Me Feedback

brendab

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brendab Contributor
brendab
Posted

Ok, I have been gluten-free off and on for the past few years and KNOW it makes me feel better but most of my symptoms are neurological so I have troubles staying on it or believing I have anything more than an intolerance. I just recently did an elimination diet to see what was bugging my new baby and I eliminated wheat, dairy, soy and eggs. I naturally go gluten lite doing that. Recently I added wheat back into my diet and like a drug I cannot stop eating it; it tastes too good! So, here is what is going on:

I've been eating wheat in small amounts for about 4 weeks now and the first week I had mild stomach/intestinal pain, aches and a general heavy feeling throughout the entire GI tract and that has been constant for the entire 4 weeks. I have gotten a headache almost everyday, varying in discomfort, my chronic fatigue has returned, the first week or so I felt like I was taking some drug that made me feel "out of it" and my reflexes were slow and thoughts were hard to get together, that is still happening though.

My GI issues are mainly the heavy feeling, increase in gas but rarely D and mostly C. The color ranges in normal brown to tan/yellow but yesterdays was very, very orange. (I'll get to that later) Sometimes when I have to go it's with great urgency and I fear I run the risk of an accident if I do not drop everything and run to the bathroom. Yesterday I took my 15 year old daughter to an early morning class that starts at 6am and I wait for her in my van until class ends at 7 but while we were there I had to run into the bathroom and it's no wonder it felt so urgent as there was an enormous orange stool waiting for me! Eek! When I flushed, it disintegrated before disappearing and that was strange as well. Later in the day (after eating a good amount of gluten) I had a severe urgency and ran up the stairs to use the potty to find soft, floating, orange stools and then it turned into burning D. OUCH! My stomach hurt so badly I cried some and today I am sore, like I was stabbed in several places. My tummy is still grumbly today and it seems like D will return but it hasn't. I'm a bit nervous to leave the house!

Now, I am not going to pretend the gluten didn't do this to me and I am toying with the idea of continuing since I have been on it for 4 months (not a huge amount, maybe one thing per day or every other day) so how much longer would I need to be on it to get a positive result in testing? yes, I am one that needs testing results for various reasons. :)

I guess my question would be, is this what celiacs see and feel when they have consumed gluten? Why, after 4 weeks has it taken this long to feel significant symptoms? Is that normal? I appreciate any and all insight, I am sure many are sick of talking poop but it is a popular topic at my house with food allergies and a 2 year old who I am almost positive has celiac. I wish I understood it better!

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cassP Contributor
cassP
Posted

have you been tested yet??? you need to get serious with getting a test and doing a proper gluten challenge for it-

dont continue this "toying" around with eating gluten lite- i did it for years- i kept talking myself out of possibly being a celiac... i dont know if its fear, denial, or just the fact that it tastes so damn good- but ya- i, too am one of those who needs an official diagnosis.

i know it's tempting to ignore it- because i am also one of those people who doesnt always react right away to it (altho the last time i had gluten, my heart rate shot up to 160bpm)

anyways- ya- i had all kinds of reactions- usually bloating/pain, and "C". this was all during my "gluten lite/atkins/bloodtype" phase. before i tried atkins- i actually DID have the "D" EVERY DAY. when you're gluten lite- you may not always have extreme reactions i know- trust me- i procrastinated for way too long. you dont want to damage your body- figure out if you're doing a challenge and a test- and then go gluten free.

Skylark Collaborator
Skylark
Posted

Supposedly it takes 4-6 weeks of a full gluten diet, meaning the equivalent of four slices of bread a day to have a shot at testing positive. You could talk to your doctor, get tested now, and then ramp up to full gluten for another month if the tests are negative to be sure. (But be careful. You can make yourself really sick challenging like that.)

It takes 4 weeks for you to feel really bad because you have to manufacture antibodies, recruit lymphocytes to your intestine, and then systematically destroy your villi. This takes time. :blink:

gary'sgirl Explorer
gary'sgirl
Posted

I just recently did an elimination diet to see what was bugging my new baby and I eliminated wheat, dairy, soy and eggs. I naturally go gluten lite doing that.

Hi there! I have left some comments on some of your other posts about your 2yr old.

Anyway, I just thought that i would mention that two of my kids started having reactions to something (gluten) when they were around three weeks old. I was nursing them 100 percent. When the problems first started with my daughter I tried eliminating the top 8 allergens, which include all the ones that you mention taking out of your diet, and at first it seemed to help a little, but it didn't continue to help and I couldn't figure out why at the time. Now looking back I know why. It was because at first when i cut out wheat I wasn't having any other grain either, but after a couple of weeks i started to have oatmeal (which was not certified gluten free) and that was right around the time her symptoms started getting worse.

I just wanted to share this in case it might help you with your baby. I was searching every where for so long to find out what was wrong with my kids and I wish that I had known about the gluten thing when my daughter was first showing signs (or even better - before I had kids :) ), because it would have saved us a lot of pain and struggles. It may not be what is wrong with your baby, but it could be. Just follow your instincts and if you think that it could be the problem, I would encourage you to go off of gluten until you are done nursing and then if you feel you need a diagnoses do the challenge then.

Also, it does seem like your symptoms line up with celiac pretty well.

I hope this craziness settles down for you soon.

brendab Contributor
brendab
Posted
  • Author

Thank you for the replys :) I'm so confused though! The past 2 days I have really allowed myself to eat as much gluten as I have wanted to and today when I use the bathroom my poop was normal. This is what throws me off entirely and makes me doubt myself, I just don't know anymore.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you for the replys :) I'm so confused though! The past 2 days I have really allowed myself to eat as much gluten as I have wanted to and today when I use the bathroom my poop was normal. This is what throws me off entirely and makes me doubt myself, I just don't know anymore.

Reactions can be delayed for up to a week. Some folks also have symptoms other than gut related like migraines, bone and muscle pain, brain fog, irritiability etc. Keep up with the challenge and don't assume you are safe with gluten after only two days.

brendab Contributor
brendab
Posted
  • Author

Reactions can be delayed for up to a week. Some folks also have symptoms other than gut related like migraines, bone and muscle pain, brain fog, irritiability etc. Keep up with the challenge and don't assume you are safe with gluten after only two days.

I plan to keep it up I think, even though I feel like crap. My GI symptoms really confuse me!

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