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Back On Gluten


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16 replies to this topic

#1 granolagal

 
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Posted 14 November 2011 - 09:52 AM

So I just got a call that I need to get in for an endoscopy and biopsy asap. I was diagnosed with celiac disease off blood work alone 4 weeks ago, and have been gluten-free ever since. So now I have to go back on gluten (and eat it every single day) so that I have a chance at accurate test results from my procedure which is scheduled for December 20th (5 weeks from today).

Nervous about how the next 5 weeks are going to go.... :(
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#2 navigator

 
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Posted 14 November 2011 - 12:00 PM

I know how you feel. I went back on gluten for 7 weeks before endoscope and biopsy on 26th October. My worst coeliac sympton is fatigue and that hit once I was back on gluten. Although I also had bowel and stomach issues, for me the fatigue was the worst. I have to say that I only managed to last it out as I wasn't working at the time. However, the seven weeks which seemed such a long way away at the start, came to an end and once I was back gluten free my health began to improve.
Good luck, hope you don't have too bad a time.
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#3 granolagal

 
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Posted 14 November 2011 - 12:11 PM

I know how you feel. I went back on gluten for 7 weeks before endoscope and biopsy on 26th October. My worst coeliac sympton is fatigue and that hit once I was back on gluten. Although I also had bowel and stomach issues, for me the fatigue was the worst. I have to say that I only managed to last it out as I wasn't working at the time. However, the seven weeks which seemed such a long way away at the start, came to an end and once I was back gluten free my health began to improve.
Good luck, hope you don't have too bad a time.


Thanks Navigator. I just hope 5 weeks back on gluten is enough time to show up on the scope/biopsy. I'd hate to go through all of this and then things come back inconclusive or false negative because I was gluten-free only 5 weeks before then. Oh well, I think it's important to try so I'll just bite the bullet. Hopefully I won't get to the point of needing to be off work, but it may come to that. Right before I went gluten-free I had taken a whole week of sick leave and then worked 1/2 days for another week because I just couldn't manage. But that was after a life-time of eating gluten. So...we'll see how it goes!
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#4 svs

 
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Posted 14 November 2011 - 12:21 PM

Hopefully it will all go well and be worth it in the end!
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SVS
Stomach issues for over 15 years; doctors initially thought it was IBS. After years of meds for that not working, I gave up!
Have had 2 negative blood tests for Celiac due to already eating gluten-free. Doctor won't do biopsy due to Aunt having Celiac; he says he's 90% sure I have Celiac too.
Trying hard to make this my lifestyle! :D

#5 navigator

 
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Posted 14 November 2011 - 12:53 PM

Just try and take care of yourself as much as you can. Some of the things I used were bubble baths, reading and going for massages and reflexology. I found that I was slipping into a down and these helped me. I also did a daily countdown and kept thinking 'that's one less day of gluten to go'.
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#6 Silencio

 
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Posted 14 November 2011 - 11:16 PM

Whats the point of going back on gluten if the blood tests already say you have celiac? I was also diagnosed by blood test only. Could the blood tests be wrong? I have an appointment coming up for a GI and im thinking they are going to tell me the same thing.
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#7 ravenwoodglass

 
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Posted 15 November 2011 - 05:25 AM

Whats the point of going back on gluten if the blood tests already say you have celiac? I was also diagnosed by blood test only. Could the blood tests be wrong? I have an appointment coming up for a GI and im thinking they are going to tell me the same thing.


When blood tests are positive they are positive. False negatives are common but not false positives. It is up to you whether you want an endo or not. But if you do want one you do need to keep eating gluten until that is done. Even then you do have a risk of a false negative on the biopsy so go on the diet as soon as the test is done and stay on it even if the biopsies are negative.
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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)

#8 granolagal

 
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Posted 15 November 2011 - 07:16 AM

When blood tests are positive they are positive. False negatives are common but not false positives. It is up to you whether you want an endo or not. But if you do want one you do need to keep eating gluten until that is done. Even then you do have a risk of a false negative on the biopsy so go on the diet as soon as the test is done and stay on it even if the biopsies are negative.


I thought I read somewhere that although very rare, false positives do happen?

"One negative aspect of the TTG antibody is that it can be falsely positive in a patient who has another autoimmune condition"

(http://americancelia...ease/diagnosis/)

I also read a study as well, but it seemed to focus on children (http://www.pediatric...115/5/1341.full). My ttg score falls within the medium range 20-100 (mine = 79).

However, aside from "just" confirming the celiac disease diagnosis, there are also other reasons to get the biopsy:

"For adults there is another importance for a biopsy, and that is that the biopsy is a baseline for which we follow up. We know about 50% of people who are diagnosed with celiac disease as an adult will not heal their intestine and failure to heal the intestine may be associated with a negative outcome."

(http://www.mayomedic...celiac-bht.html)

Anyway, I'm certainly no expert (that's putting it mildly!!) but that's what I found after doing some quick internet research. For me, I think it's better to get this data now, and then get on with my gluten-free life after the procedure is done.
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#9 granolagal

 
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Posted 15 November 2011 - 07:36 AM

Me again.... Also wondering if the biopsy/scope can tell the difference between gluten intolerance/sensitivity versus celiac?

I don't know enough about all of this. Which is why I'm happy to go to a GI to talk about it all...
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#10 Silencio

 
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Posted 15 November 2011 - 07:52 AM

I don't know enough about all of this. Which is why I'm happy to go to a GI to talk about it all...


Same here, im so new to all of this, really looking forward to talking to the GI. It cant come soon enough. Doctor said he's afraid I might have cancer. Scared the hell out of me.
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#11 Reba32

 
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Posted 15 November 2011 - 07:53 AM

I don't think just intolerance shows up on intestinal biopsy, only outright Celiac disease does. I think the only way to dx intolerance is to find out how the elimination diet works for you. If you feel better on a gluten free diet, and you have no markers in your blood and biopsy is negative, then you're likely intolerant, but not Celiac. But if you have a positive blood result for Celiac disease, then you're positive. Biopsies are often done incorrectly, or not enough samples are taken, or they're taken from a non-damaged part of the intestine.

Either way, if you feel better not eating gluten, that's what you should continue with. Because I'm fairly certain, as are some doctors, that gluten intolerance can escalate to Celiac disease if left untreated. And by that time the damage may be irreversible.
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#12 granolagal

 
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Posted 15 November 2011 - 08:07 AM

Either way, if you feel better not eating gluten, that's what you should continue with.


That's the really weird twist to all of this. I went gluten free for 4 weeks and my stomach only got progressively worse. The bloating and pains ended up stretching all around to my back. I was so sick for the past week my stomach felt like it was exploding. But I never got sick. If anything, I couldn't seem to get my digestive tract moving. Even with all kinds of supplements, digestive enzymes, and natural non-gluten fibre. I was so sick yesterday I left work early. Then I got the call about the biopsy, so I went back to eating gluten right away. It's been 24 hours and I feel BETTER than I did before!?!?!? My stomach pains have almost gone away and same with my lower back pains. Isn't that strange??

Anyway, I'm not trying to say that I don't have an issue with gluten - because I can't deny that my ttg came back at 79. But it's just all so confusing for me. I thought I'd go gluten-free and then gradually start to feel better and it would all come together as a big "a-ha" moment. But it seems like every day that goes by leaves me more confused. Hopefully my GI will help talk it all out with me.
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#13 granolagal

 
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Posted 15 November 2011 - 08:22 AM

Same here, im so new to all of this, really looking forward to talking to the GI. It cant come soon enough. Doctor said he's afraid I might have cancer. Scared the hell out of me.


Oh man, that is very scary. Hopefully you get an appointment sooner than later so you can get your answers! I remember when my doctor said I had cancerous cells and had to get a biopsy to see if they were malignant or benign. I am thankful to say that in my case they were benign but I know the anxiety that lasted throughout the process. I pray that your outcome will be the same as well.

Feel free to continue to post as you go through this - everyone on here is so supportive.
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#14 Reba32

 
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Posted 15 November 2011 - 08:26 AM

what were you eating typically after you went gluten free? You likely also have other intolerances, or you've overtaxed your digestive system with something while its trying to heal.
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#15 granolagal

 
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Posted 15 November 2011 - 08:39 AM

what were you eating typically after you went gluten free? You likely also have other intolerances, or you've overtaxed your digestive system with something while its trying to heal.


As best I could I stuck to non-processed food. Although I did try the occasional gluten-free product, I tried to steer clear of them. I virtually ate the same types of foods as I did before going gluten-free. Lots of fruits and raw vegetables, beans, lentils, dairy products (and I did call the companies to confirm which products had cc risks), eggs, nuts, and....that just about sums it up. Typical day for me would be:

Breakfast: fruit salad (made myself) --->no change from pre gluten-free diet
Lunch: salad or veggies and dip or egg salad on lettuce --->typical pre gluten-free diet except I used to eat the egg salad in wraps
Dinner: stir fry (no soya sauce) on brown rice, or lentil tacos (gluten-free corn tortillas), or vegetarian bean chili --->somewhat similar to gluten-free diet except I used to eat more vegetarian faux-meat type products (like veggie nuggets, mexican veggie ground round, etc)
Snacks: nuts, gluten-free popcorn, glosette raisins (too hard to resist... :rolleyes: ), more frut --->somewhat similar to pre gluten-free diet except I used to eat a lot more crackers and cheese (that was my real guilty processed pleasure = crackers)


So...I don't know. It's strange. I thought maybe I was eating too many beans, so I cut those out altogether with no noticed improvement. And now, after eating Subway, and chocolate chip cookies, and crackers...my stomach is settling down!?! :blink:
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