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Lister

Challenge- Need Advice

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so i had my check up today with my gastroentorologist. He was fairly conserned with my weight loss again i seem to be loosing about 10pds a month, i told him it was probably from the gluten-free diet im on and he asked why i was still on it, i told him because my regular doctor told me i probably have celiac disease and that i should stick to the diet, he said "well your x-rays showed massive damage but your blood work was negative, even though bloodwork can come out a false negative since you have such visible damage the work would have came back positive if thats what the damage was from" so he told me i need to go back to eating normal starting right away. So i have been gluten-free for 6 months and now im supposed to start eating? it does not seem right i cant even picture myself biting into something knowing that it contains wheat. So in fear of making myself sick i want to take this as slowly as possible, what would be some good introductory foods to challange myself with as to prevent a full scale attack if i do possibly have a gluten intolerancy

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Was your blood work negative because you have been gluten-free for a long time?

I have little knowledge about this topic and appeal to those who can give you better advice on this than I can. From what I know, blood work can be negative if you've been gluten-free for a while; the damage of small intestine is just the residual effect of the disease and will not cause a blood test to be neg or positive.

Where in the instestine is the damage? Small or large intestine? And finally how would going back on gluten be worthwhile? If you are losing weight it's not because of the gluten-free diet in itself; it either means that you have an additional problem along with celiac or your damage is in small intestine and you are still not healed enough at this point. My suggestion is to stay gluten-free and keep a diary of what you eat and when and the caloric value of each meal to make sure that you are getting enough calories.

My husband has this problem (losing weight after being gluten-free for 3 years); but he has no intestinal damage anymore. We don't know why this is happening but he should not eat gluten just to improve his chances of gaining weight as that makes no sense.

Have you considered getting another Gastro's opinion?

D.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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so i had my check up today with my gastroentorologist. He was fairly conserned with my weight loss again i seem to be loosing about 10pds a month, i told him it was probably from the gluten-free diet im on and he asked why i was still on it, i told him because my regular doctor told me i probably have celiac disease and that i should stick to the diet, he said "well your x-rays showed massive damage but your blood work was negative, even though bloodwork can come out a false negative since you have such visible damage the work would have came back positive if thats what the damage was from" so he told me i need to go back to eating normal starting right away. So i have been gluten-free for 6 months and now im supposed to start eating? it does not seem right i cant even picture myself biting into something knowing that it contains wheat. So in fear of making myself sick i want to take this as slowly as possible, what would be some good introductory foods to challange myself with as to prevent a full scale attack if i do possibly have a gluten intolerancy

Hi Lister, I know you have been see-sawing about whether or not gluten is at the root of your problems and the challenge should give you a definite answer. When you add wheat back in you should ideally make sure it is a just wheat product. Something like cream of wheat or triscuits is good. Have some about three times a day but don't overdo it. In other words don't go out and get a pizza and wash it down with beer or start by eating whoppers 3 times a day. If gluten is a problem you may not see an effect until 3 days or more. If you do react it will be obvious. If you have a reaction let you doctor know immediately and stop the challenge at that point. I know it is a bit scarey, I was diagnosed through an elimination diet and challenges when my blood work came back negative repeatedly. The good part is you will have your answer as far as the gluten goes. Good luck and I hope things improve. Did you ever get the endo-colonoscopy done?


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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Just a little tidbit of info that you may find useful... I did my gluten challenge about two years ago. I was terrified to start eating gluten, but when I did I quickly became re-addicted. I ate about four full servings a day for 1-1/2 months with absolutely no symptoms. I never had the endo so I thought great, I don't have it afterall. Then, on the 47th day of my gluten challenge I began to feel totally rundown, tired, lethargic... Still no gastro symptoms though. I started taking naps again and each day got harder and harder to get out of bed. I was so heavily in denial though because I so wanted to forget about the whole Celiac thing. Anyway, to make a long story short, I ended up sick as a dog, not even able to care for my child, in public, with only port-a-potties to hang over. Lovely. I still have pains that haven't recovered since doing this challenge. I'm sure that I did a lot of damage. I can't even tolerate walking through a bakery now without getting glutened. I'm much more sensitive since doing my challenge. Please, don't make the same silly mistake that I did. Take it slow and never ever overlook symptoms that could be from gluten. I made my life miserable and it took me months to get back to somewhat normal. I think if I had admitted to myself that the fatigue was gluten related I wouldn't have gotten so sick. Be careful.


~Angie~

Gluten free since May 2004

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I think you've got sound advice from the previous posters.

Ravenwoodglass had good advice about adding back in wheat and the possible delayed reaction. I do know that other foods that tend to cause damage are soy and dairy.

It would seem like something else is going on but I haven't been following your previous posts. In this case I would reintroduce the gluten and if you have a bad reaction then stop the challenge.

Hope things go well and you get to the bottom of this with your doctor.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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the reason he is convinced, when i failed the the blood test it was two days after i had the test that showed the damage, and was before i was gluten-free also, sorry i forgot to mention that. the gastro guy is 100% convinced its not celiac disease or anything gluten related because the only symptom i even had to suspect celiac disease was aparently that damage to the small intestine but aparently that kind of damage is very vage and can be from lots of things but he says because of how much damage was done there would be no way my blood test would be negative withen 2 days later of the test. I dont know though now you guys got me to scared to challange since i wont know if im secretly killing myself. Crappy... i made the mistake of telling my girlfrend that im supposed to eat normal and now she is demanding i do thanksgiving with her family and that i take her out for are anaversery and she wont take no for a answer since the doctor said for me to eat normal. Also for some reason even though i feel i eat fairly "normal" or the best you can gluten-free, my doctor gave me one diagnosis yesterday and said that its half the reason my stomich hurts and thats that i am anarexic. i really dont see how i am since like i said i eat but aparently with how bad my eating habbits have gone and the fact that i can pysic myself out eating anything thats safe and then i wont eat it ever again to the point of i only eat 3 diffrent foods potatoes,eggs,chicken. so he really wants me back to normal. I dont know what to really do at this point. Im taking it uber slow lol, i went out and got some chips that have cc issuse, already ate 2 bags one yesterday and one today and my stomich is doing alot better? like the acid problems i normaly have in the morning are not here today so wtf

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another reason for the challange even though not the real reason, is im having a endo in 3 months so i guess it would give a chance to possibly see if there is celiac disease if im back on the wheat, but the test is really to look for gastritis or ulcers, possibly chrons.

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Lister,

It seems from your last posts that your doctor has reason to be concerned.

If you are only eating three foods then you need to introduce one new food every 4 days to a week and see if you have a reaction which can take up to 3 days from start to finish. Did you eliminate foods due to concern for cc or did you not feel well after eating them? You will need to keep a food journal/diary to note any possible reactions to what you eat.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Lister, even if you do have celiac disease, a three-month challenge will NOT be enough to get a positive biopsy after being gluten-free for as long as you have been. It would have to be six months to a year to even have a remote chance of being valid.

And I can see that your weight loss would be because of your unbalanced diet. You need to eat vegetables and fruits, and you likely don't get enough fat, either. No wonder you're losing weight. It has nothing to do with being gluten-free as such.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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the gastroentorlogist was confused as to why i was ever told to go gluten-free, he was looking over everything and he says there was never anything that should have pointed in that direction and that my doctor was just taking guess's and did not not know he was doing ( and that was definatly true since he dianosed me with like 4 other things that where wrong also) still afraid to challange though, but i did start eating things that have cc issuses like kettele chips and im going to go buy some deli meat and maybe a rotersery chicken just really scard to eat something thats like 100% wheat

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Don't worry Lister...I was afraid to eat anything wheat containing when I did my challenge too. But have no fear, the desire came back in no time for me. I think all it took was a BLT on fresh white bread...ooohhh I miss those. I hope you get some answers soon so you can finally feel better. And please, even if its not a gluten filled food add a few more things back into your diet so you can boost those calories a little.


Amy

Diagnosed by biopsy with DH August 2005

Diagnosed with hypo-thyroidism December 2005

Diagnosed by biopsy with Celiac July 2006

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oh no, what's wrong with chips and a rotisserie chicken. I thought these things were gluten free. :(

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all depends on what brands/ flavors you have, some are safe some are not, rotersery chicken i would imagine would be a pretty risky thing to eat but not guarinteed to be gluten containing, as i said im afraid to full on challage myself

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doing this partial, kinda reintroducing of a little bit of gluten maybe thing is just going to make it harder for you to tell if you're reacting or not. the best way to test is to just take a big dose of gluten (bagels are generally made with high-gluten flour, and a good place to start) and go for it. otherwise, you get back to feeling a little worse and worse until you don't realize that it's happened.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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doing this partial, kinda reintroducing of a little bit of gluten maybe thing is just going to make it harder for you to tell if you're reacting or not. the best way to test is to just take a big dose of gluten (bagels are generally made with high-gluten flour, and a good place to start) and go for it. otherwise, you get back to feeling a little worse and worse until you don't realize that it's happened.

I agree totally with this. You need to do something that will give you an obvious reaction to know for sure. If you add it back in drips and drabs you are not going to know. Think about the gluten symptoms and get some symptom relief like immodium and an antiacid to keep on hand in case you need them. Then go grab that bagel or some triscuits.


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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can lactose intolerancy cause the same problems as gluten intolerancy? i have always had lactoseintoleracy i used to have to take pills as a child, but over the years i had forgoten about it and always ate dairy very often, when i got sick the first thing they removed from my diet was bread i still felt sick then i removed dairy and i started to get atleast somewhat better, so now im on my challange i still have not had like a huge amount of bread but i have been eating things that do contain wheat like smoked chicken breasts, chips that have flour and so on and im still feeling fine, i know i cant base it off that and i need to eat some real bread stuff to find out but i was just wondering if possibly all of this was from years of eating dairy and drinking milk when i should not have been

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can lactose intolerancy cause the same problems as gluten intolerancy? i have always had lactoseintoleracy i used to have to take pills as a child, but over the years i had forgoten about it and always ate dairy very often, when i got sick the first thing they removed from my diet was bread i still felt sick then i removed dairy and i started to get atleast somewhat better, so now im on my challange i still have not had like a huge amount of bread but i have been eating things that do contain wheat like smoked chicken breasts, chips that have flour and so on and im still feeling fine, i know i cant base it off that and i need to eat some real bread stuff to find out but i was just wondering if possibly all of this was from years of eating dairy and drinking milk when i should not have been

Casein intolerance can have the same symptoms as gluten intolerance. Lactose intolerance usually has symptoms that are strongly GI related only. And lactose intolerance will show up very quickly. For example with a casien intolerance the reaction will be more systemic and often delayed - at times a day or so, with a lactose intolerance the symptoms are usually gas, cramps and D that show up within a couple hours of eating dairy products. Also if you have any lactaid tablets they will prevent a reaction from lactose but will not prevent a casien reaction. You might want to challenge dairy first, with and without the use of lactaid enzymes to check. I hope you can figure this out soon.


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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well so far so good been about 5 days now with normal food the only changes have been positive. Im having normal bms finally for the first time since going gluten-free, now i am using the restroom without strain and 3 times a day too :). only downside so far is i feel more tired then normal but that could be because i was without carbs for so long my body is trying to figure out how to use them again. Also one thing idont understand is brainfog, i dont have it but i keep getting light headed dizzy spells but they seem to only hit me after i drink cranberry juice.. kinda confused on that one

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