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Zeno

Greetings

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Hi everyone,

I'm a new member looking for some advice. This past August I had some general blood work down and was found to be iron deficient. I'm a 22 year old college student, and we wanted to find the cause of the deficiency. After a few more tests the question of Celiac arose. I had the general gluten intolerance tests, and my results are as follows: Igg = 101.3, IgA = 49.2, Anti-TTG = normal, IgA serum=170 (normal), and Anti-EMA = normal.

Anyway, I am having an endoscopy next month and was wondering what I should do until then? I've had gluten my whole life and have been an avid consumer of gluten in college, to say the least. Cutting out gluten pretty much cuts out 99% of what I consume on a daily basis. I rarely have time to cook my own meals and frequently eat at restaurants or at various dining halls with my roommates.

I have bought a few books, some gluten free food, etc. However, the lifestyle change is positively daunting to me. I just don't have the time for it. I was wondering if I could at least wait until the endoscopy to go gluten free? However, my parents are worried and would like be to begin right now. The symptoms like excessive fatigue and bloating or upset stomach had me wondering at times if I didn't experience these more than average, but I've basically just learned to deal with them. At this point waiting seems worth it, even at the expense of possibly damaging my villi further. Any opinions?

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The normal ranges for different labs vary, so I don't know if any of yours were abnormal, although you had normal results for the ones which are thought to be most accurately suggestive of celiac disease, the anti-tTG and endomysial antibodies.

The supposed normal ranges for Igg and IgA are 5-7, and mine were 101.3 and 49.2. I am under the impression that they are certain I have this and are just doing the endoscopy as a formality (and to check for damage of course).

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The supposed normal ranges for Igg and IgA are 5-7, and mine were 101.3 and 49.2. I am under the impression that they are certain I have this and are just doing the endoscopy as a formality (and to check for damage of course).

If they have already diagnosed you and are doing it as a formality my first query would be how long until they do it? You increase your chances of developing other problems and intolerances by continuing to eat something that is poison to your system. I am with your parents on this one, if you don't need the biopsy to confirm diagnosis and it sounds like you have a savvy doctor who is telling you to stop eating it, then you should stop. It is a bit overwhelming at first but you are in a great place for info and support. Ask any questions you need and welcome.


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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Thanks for the advice. I spoke with my mom today (she spoke with the GI), and I guess they do need the endoscopy for a Celiac diagnoses. The antibody results just prove I have some form of gluten sensitivity and not necessarily full blown Celiac.

I guess what I'm wondering is if the normal range is 5 and mine was 100+....what are my chances that I do not have Celiac disease? Can people with just a gluten allergy or gluten intolerance exhibit iron deficiency? Or are nutrient deficiencies usually just found in those with full blown Celiac? I have been taking an iron supplement since we learned about that, and my levels are back into the normal range.

My endoscopy will be over Thanksgiving. Right now I am still to the point of letting it sink in. I mean pizza, beer, sandwiches from the bagel shop, fast food, Chinese food...I basically live off this stuff (not really by choice though). Believe me, I would love to be able to have fresh salmon and mashed potatoes for dinner. But in a college town and this environment it just doesn't seem feasible.

I don't know how to cook nor do I have time learn, and subsequently start cooking. Luckily I enjoy gourmet food and seafood. The diet isn't a problem as far as taste and finding foods I like (except the chocolate chip cookie part). It's just a problem of having access to the food and time to cook.

Do a lot of people order food online? Is anything from a fast food restaurant safe?

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You already know that if you're having a biopsy taken you shouldn't go gluten free before that, right?

Just wanted to point that out just in case. That said, you could use this time to already find out about ingredients, and start learning how to read labels, and maybe try some gluten free products to see which ones you like. And eat all your gluten favourites one more time...

If cooking is the only way to stay healthy (it is for me) then believe me, you will find the time to do it. Once you get the hang of it it doesn't have to be that hard or even take a huge amount of time. But you should be prepared to spend some time learning in the beginning. There's just no way around it - being diagnosed with a life long auto immune condition is going mean things are going to change.

With blood test results that high, personally I would try the diet after the endo is done, regardless of what it says.

Pauliina

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Thanks for the advice. I spoke with my mom today (she spoke with the GI), and I guess they do need the endoscopy for a Celiac diagnoses. The antibody results just prove I have some form of gluten sensitivity and not necessarily full blown Celiac.

That is correct, if they are looking for celiac damage to diagnose you then they do want you to keep poisoning yourself. You do need to know that gluten intolerance is just as serious as full blown celiac. Regardless of the results of the biopsy you need to go gluten free. There are lots of false negatives as there is no way to biopsy all 22 ft of your small intestine and damage can be patchy and be missed. There is a lot of damage that is done to systems like the nervous system and brain, gallbladder, liver etc. that may occur before you get to the point where damage is severe enough for a GI to say, 'okay now you villi are destroyed I guess you really are celiac'. I was amazed when I read your first post and thought maybe some of the GI's had wised up in this country but that obviously wasn't the case. I wonder how long it will be before GI's in this country use the mucous membrane challenge and stop the need for poisoning us for months for an invasive biopsy instead.


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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That is correct, if they are looking for celiac damage to diagnose you then they do want you to keep poisoning yourself.

That wasn't made clear to me. However, I would like to do that just so they get as much information as possible when I have this endoscopy done. Do you know by any chance if I can have iron deficiency and not have damage though? I mean, common sense would say that if you have iron deficiency, your villi aren't absorbing it...but I guess I was wondering if this could be caused by something else? However, I'm a male and not anemic.

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That wasn't made clear to me. However, I would like to do that just so they get as much information as possible when I have this endoscopy done. Do you know by any chance if I can have iron deficiency and not have damage though? I mean, common sense would say that if you have iron deficiency, your villi aren't absorbing it...but I guess I was wondering if this could be caused by something else? However, I'm a male and not anemic.

If you are not anemic then you don't have an iron deficiency. They should have tested iron, ferritin, folate and B12. Sometimes people can have numbers that are in a normal range but still be having a deficiency problem with B12. Do you what your tested levels were? And their reference ranges? Do not and I repeat DO NOT supplement with iron unless you know for sure you need it. Iron taken in excess can build up in organs and damage them and can also be toxic short term in high doses. You should however get a good gluten free sublingual B12 and start taking it immediately. Even if your multi contains B12 chances are your intestines are too damaged to form the intrinsic factor and you are not able to absorb and utilize it right now. If the reason why you think you may be anemic is because your tired and maybe pale with dark circles under your eyes this may have more to do with your not absorbing nutrients and with your B12 levels dropping. Taking the B12 will not interfer with your biopsy but may help you feel better till it is over with.


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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My iron levels were very low, the hematologist recommended taking 3 325mg ferrous sulfate iron pills a day. I didn't have B12 problems though, which is why I didn't have "iron deficiency anemia." I started taking the iron supplements (albeit not diligently) and my levels are back into the low end of the normal range.

So I talked to the GI again today and asked her about whether I need to keep consuming gluten until my endoscopy. She said that the 4 gluten free weeks won't matter, and that I should start going gluten free now even though my endoscopy isn't for another month. Which is good news and bad news in a way I guess.

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My iron levels were very low, the hematologist recommended taking 3 325mg ferrous sulfate iron pills a day. I didn't have B12 problems though, which is why I didn't have "iron deficiency anemia." I started taking the iron supplements (albeit not diligently) and my levels are back into the low end of the normal range.

So I talked to the GI again today and asked her about whether I need to keep consuming gluten until my endoscopy. She said that the 4 gluten free weeks won't matter, and that I should start going gluten free now even though my endoscopy isn't for another month. Which is good news and bad news in a way I guess.

Glad to hear that your iron levels are improving with the supplements, it sounds like you have a great and knowledgable doctor, she's a keeper.

It will be an adjustment to go gluten-free, some of us do it easily but they are in the minority. Keep it as simple as you can at first and try and go with naturally gluten-free food as much as you can. My DH ate a lot of steaks and baked potatoes those first few weeks, his favorite food. I was stuck with bland stuff like plain rice and chicken and applesauce since my gut was in very bad shape but the boredom was worth it as my system healed and I started to feel better. This is a good place for info on the diet and it is a great place to vent in the first weeks.

If you are living with Mom and Dad or a significant other it can help a lot to get them to come on and read a few posts. Sometimes that can help them get a handle on the effects we sometimes get when we eliminate the toxin. You may have a withdrawl period with a bit of ups and downs the first couple of weeks. This is not unusual and you will get through them. When things get the worst and if you get tempted to cheat at a low point try to remember that if you do you will prolong the withdrawl. That aspect is over for most of us in about 2 weeks so hang in there.


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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Glad to hear that your iron levels are improving with the supplements, it sounds like you have a great and knowledgable doctor, she's a keeper.

It will be an adjustment to go gluten-free, some of us do it easily but they are in the minority. Keep it as simple as you can at first and try and go with naturally gluten-free food as much as you can. My DH ate a lot of steaks and baked potatoes those first few weeks, his favorite food. I was stuck with bland stuff like plain rice and chicken and applesauce since my gut was in very bad shape but the boredom was worth it as my system healed and I started to feel better. This is a good place for info on the diet and it is a great place to vent in the first weeks.

If you are living with Mom and Dad or a significant other it can help a lot to get them to come on and read a few posts. Sometimes that can help them get a handle on the effects we sometimes get when we eliminate the toxin. You may have a withdrawl period with a bit of ups and downs the first couple of weeks. This is not unusual and you will get through them. When things get the worst and if you get tempted to cheat at a low point try to remember that if you do you will prolong the withdrawl. That aspect is over for most of us in about 2 weeks so hang in there.

I will admit it helps when dealing with doctors that your father is a doctor, mother a nurse, and you are one semester away from a degree in biology. But, yes the GI I've been dealing with seems very knowledgeable.

Thank you so much for the advice. I really appreciate it. I have managed to do alright on the diet for the past couple days, but I am sure there will be some serious venting. I'm also still going through bouts of denial with a lot of frustration.

Sadly mom, dad, and girlfriend (along with their respective cooking abilities) are all 200+ miles away, and I live in very much a typical college house with 3 roommates (and relentless exposure to pizza and beer). My girlfriend has already been very understanding, and I think visiting her will be an enjoyment rather than a strain as far as the diet goes. She is a vegetarian so waiters are going to have a great time dealing with us. :D

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I am not sure about 4 weeks off gluten, that it won't matter.

Well, if the villi are absent, it won't matter but what if it is the type of celiac with only increased leukocyte count?

I am in Norway, and here they need a positive biopsy for diagnosis, and here they definitely are advised to stay on gluten until the biopsy.

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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So I talked to the GI again today and asked her about whether I need to keep consuming gluten until my endoscopy. She said that the 4 gluten free weeks won't matter, and that I should start going gluten free now even though my endoscopy isn't for another month. Which is good news and bad news in a way I guess.

This runs contrary to everything that I have read and heard about how to eat pre-endoscopy. For instance, here's what it says in Dr. Green's book:

If you have stopped eating gluten before having blood work and/or an endoscopy, your doctor should be informed and you should have a gluten challenge before being tested. ...a gluten challenge consists of eating about four slices of bread/day for a month. If people are tolerating gluten well, we would prefer that they remain on gluten for at least three months before having the biopsy. This will reduce the chances that the biopsy result will not be definitive. (Celiac Disease: The Hidden Epidemic, page 53)

Kate


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Celiac symptoms since 1985 (gluten-free since 9/2/07)

Vitiligo since 1991

Environmental allergies since 1992

Polycystic Ovary Disease since 1993

HLA DQA 1*05 (DQ5)

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