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When Is The Best Time To Gluten?


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4 replies to this topic

#1 EmiPark210

 
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Posted 28 March 2013 - 07:16 PM

I know I've posted a lot about my biopsy and the process to get me here... but the date has FINALLY been set. I will be done testing April 19th at 8:30am! Very exciting.

 

But here's my issue, cause there always seems to be one. I don't know when to time my gluten intake. I'm a college student who has classes on and off from 9:30am till 5pm. My morning classes are the most important for me to be 100% at because I have Russian language every day and it's very participation based. I am also part of the Masters swimming club which is at 6:30 Tuesday/Thursday and 8am Saturday. I also have a vision issue where I have holes in my right retina so I'm missing parts of my visual field. This makes nausea very difficult to deal with because it's even more disorienting because I can't see completely. For now, the holes are something I just have to live with and adapt to. My professors have been warned about all the issues this is causing and I am planning to talk to academic support tomorrow to see what they can help with.

 

My symptom cycle (as I've been able to figure out): 30 minutes post glutening, I get nauseous which leads to extreme dizziness and a strong desire to lie in a dark room with my eyes closed until it goes away. 6-12 hours later I have sulfuric flatulence that at most is highly embarrassing and slightly uncomfortable. 40 hours later, my body starts preparing to expulse all the gluten and just clear out my gut in the process. This causes major gas build up which is uncomfortable while sitting and a sense of urgency in terms of clearing it out. Usually by 50-60 hours after I am glutened I'm back to normal. This morning I had nausea 40 hours post glutening though that might have been more vision related than gluten but I'm not sure. 

The last time I got glutened (Tuesday), it was from a cross contaminated potato chip with a possible brownie crumb. I haven't been being careful because I know I'm going to have to eat gluten for the next three weeks anyway. But I haven't fully started going back on it because I've had a ton of tests and stress this week with school. I know I need to start again...I just, in my nauseous brain fogged state, need help with the math.

 

Update below: Day 1 of eating gluten and my confusing response.


Edited by EmiPark210, 30 March 2013 - 01:08 PM.

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IBS Diagnosis: 2010

Celiac blood results: 2/21/13 Positive

Biopsy: 4/19/13 - visually positive, 4/23/13 - positive


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#2 nvsmom

 
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Posted 29 March 2013 - 09:51 AM

I don't know if there is a good time...I would suggest the evening because then the immediate symptoms can be experienced at home or while sleeping. I'm afraid if you are consuming gluten every day, there will be no getting around the lingering symptoms... eventually you'll be having symptoms on most days.

 

Hang in there.  :(


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#3 ravenwoodglass

 
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Posted 29 March 2013 - 10:45 AM

Have you talked to your doctor about your symptoms and their impact on your functioning? Since you have positive blood tests and experience clear symptoms post glutening maybe they can give you their 'official' diagnosis without need of a challenge.


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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 EmiPark210

 
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Posted 29 March 2013 - 02:49 PM

I got academic support on board to help with note taking now that I'm not going to have tests until a couple weeks after the endoscopy so that should help. 

 

I didn't get a complete blood pannel done, only ttg IgA because I didn't find this lovely forum until a week or two afterwards. I've only been able to discern the gluten cycle after going off it and scheduling all my appointments. I would just hate for in the future to find out that I can't be accommodated because I only had a blood test or something like that. I'm certain it's celiacs but I just never want to have to get near gluten again after this. I'm fine on my vitamin levels; I got those results back. The only thing I'm deficient on is vitamin D which makes sense when today was the first "sunny" day since December. 

 

I did mention that I could tell exactly when I had gluten and that I was worried about how much of an effect it has to which he replied that it would be best to finish my testing now. 


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IBS Diagnosis: 2010

Celiac blood results: 2/21/13 Positive

Biopsy: 4/19/13 - visually positive, 4/23/13 - positive


#5 EmiPark210

 
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Posted 30 March 2013 - 01:08 PM

I started totally back on gluten last night (instead of not worrying about/encouraging cross contamination), and I was trying to not look for the symptoms...but they weren't there at all. When I first began noticing a gluten sensitivity, I noticed I could handle it better if I had a protein heavy meal and this was true last night as well. I'm having some of the later symptoms which is almost a comfort. But I'm confused... Is there any way that my protein consumption could mitigate the initial stages of my gluten reaction? Because if so, then that makes this a lot easier to deal with. For reference I had about 35-40g protein last night with dinner (bacon, egg and cheese breakfast burrito and a dessert of 3/4c greek yogurt). 


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IBS Diagnosis: 2010

Celiac blood results: 2/21/13 Positive

Biopsy: 4/19/13 - visually positive, 4/23/13 - positive





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