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hayley3

Genetic Testing Results

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Hi,

I'm Cheryl and I've been sick for years.  I have 6 or 7 of the diseases associated with celiac disease but my tests came up negative.  I have SIBO and food allergies and my allergist (bless his heart, the only doctor that has ever tried to help me) was determined to figure out what was wrong with me.  I lost my job years ago after being sick forever.  I had an endoscopy and all it showed was inflammation and the SIBO.

 

Does anyone know how to read these results or can you point me to a web site, maybe.

 

HLA-DQ2 (DQA1*05/DQB1*02)  Positive

HLA-DQ8                                    Negative

 

HLA Variants Detected

HLA-DQA1*03

HLA-DQA1*05

HLA-DQB1*0201

HLA-DQB1*0301

 

Thanks for any help!

 

And I don't see how genetic testing is going to help me even if it is positive, when the other tests before were negative.

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I'm no expert, but it looks like you have the HLA-DQ2 gene, which is associated with celiac disease. 

 

Have you considered doing an endoscopic biopsy as well? Some celiacs test negative on bloodwork and positive on biopsy.

 

If you've exhausted all testing options with no answers, at that point, you can always try the gluten free diet and see if it helps you.

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Thanks Ruth...I did find something from Quest Diagnosics which I'll post below.  I did have the endoscopy and it only showed inflammation.  I've been on the SCD diet since 2009, and then I'm supposed to be on the low fodmaps diet, plus the migraine diet and the low sugar diet.  Also I cannot eat the foods I'm allergic to: corn, rice, tomatoes, and beans, including green beans.  So I can't even eat gluten-free foods because I'm allergic to rice and corn, which are also a no-no on the fodmaps diet.

 

So after all that , it leaves me with lettuce and animal protein.

 

Interpretive Information

Negative results for both HLA-DQ2 and HLA-DQ8 virtually exclude the diagnosis of celiac disease and indicate an extremely low risk for subsequent development of the disease (≥95% negative predictive value).4,5 In rare cases, however, when DQ2 and DQ8 heterodimers are negative, the presence of 1 of the DQ2 alleles (eg, either DQA1*05 or DQB1*02) is consistent with a diagnosis of celiac disease.3

A positive DQ2 or DQ8 result, in conjunction with equivocal histopathology and/or serology test results, is consistent with a celiac disease diagnosis.5 Positive results, however, are not diagnostic as 25% to 40% of the U.S. population have positive results. In high-risk individuals, positive DQ2 or DQ8 results reflect an increased likelihood for development of celiac disease, and periodic screening should be considered.6

DQB1*0201 results may reflect the severity of disease. Although data are conflicting, homozygosity for this allele has been associated with having more severe villous atrophy, a slower rate of villous recovery once a gluten-free diet has been instituted, and developing celiac disease at a younger age.7

 

Anyway I'm not sure why he ordered a test which is not really diagnostic.  It still puts me in limbo.  :(

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Yes Ruth,  the GI doc told me to follow the Cedars Sinai low fodmaps diet after my SIBO test came back positive. 

 

And I found a couple of other sites with different explanations of the genetic testing that I'll post in case someone else might be looking:

 

http://www.albertahealthservices.ca/LabServices/wf-celiac-edu-material.pdf

 

http://www.celiacanswers.com/wp-content/uploads/2013/12/Genetic-Report.pdf

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Thanks Ruth...I did find something from Quest Diagnosics which I'll post below.  I did have the endoscopy and it only showed inflammation.  I've been on the SCD diet since 2009, and then I'm supposed to be on the low fodmaps diet, plus the migraine diet and the low sugar diet.  Also I cannot eat the foods I'm allergic to: corn, rice, tomatoes, and beans, including green beans.  So I can't even eat gluten-free foods because I'm allergic to rice and corn, which are also a no-no on the fodmaps diet.

 

So after all that , it leaves me with lettuce and animal protein.

 

Interpretive Information

Negative results for both HLA-DQ2 and HLA-DQ8 virtually exclude the diagnosis of celiac disease and indicate an extremely low risk for subsequent development of the disease (≥95% negative predictive value).4,5 In rare cases, however, when DQ2 and DQ8 heterodimers are negative, the presence of 1 of the DQ2 alleles (eg, either DQA1*05 or DQB1*02) is consistent with a diagnosis of celiac disease.3

A positive DQ2 or DQ8 result, in conjunction with equivocal histopathology and/or serology test results, is consistent with a celiac disease diagnosis.5 Positive results, however, are not diagnostic as 25% to 40% of the U.S. population have positive results. In high-risk individuals, positive DQ2 or DQ8 results reflect an increased likelihood for development of celiac disease, and periodic screening should be considered.6

DQB1*0201 results may reflect the severity of disease. Although data are conflicting, homozygosity for this allele has been associated with having more severe villous atrophy, a slower rate of villous recovery once a gluten-free diet has been instituted, and developing celiac disease at a younger age.7

 

Anyway I'm not sure why he ordered a test which is not really diagnostic.  It still puts me in limbo.  :(

 

He probably ordered the tests because your other tests were inconclusive.  From what this says, there is a very slim change you have Celiac or will develop it later.   That is good news on one hand, but leaves you without a diagnosis.  Perhaps it's time to move on to a different clinic to see if they have more ideas, maybe a place like Mayo that will look at your entire picture at one time vs seeing an allergist for this, a GI for that, another dr for something else without getting any collaboration??

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My test results actually say:

Positive for one of the HLA-DQ variants, but what that really means I'm not sure.  

I've read that DQA1*05/DQB1*02 is equal to DQ 2.5 which is indicative of the highest possibility of celiac disease but I'm not understanding homozygous and heterzygous and how to tell which I have.

 

I've posted a few excerpts from other sites so that may have been confusing, sorry.  

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I have a similar diet.  Problems with rice and corn.  You might look at paleo or SCD diet.  The GI doctor just mentioned Foodmaps and I thought it was remarkable that it is similar to what I have come to use.  I suggest trying to add as much as possible to your diet.  I eat odd vegetables such as kohlrabi, spinach, jicama.  I make kale chips and really enjoy them.  From this I discovered I could eat kale, swiss chard steamed and enjoy the flavor.  I know how one seems to have to die to what they want everyday, but I feel so much better it also seems like small price.  You have started on a journey:  Keep walking.

 

Dee

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He probably ordered the tests because your other tests were inconclusive.  From what this says, there is a very slim change you have Celiac or will develop it later.   That is good news on one hand, but leaves you without a diagnosis.  Perhaps it's time to move on to a different clinic to see if they have more ideas, maybe a place like Mayo that will look at your entire picture at one time vs seeing an allergist for this, a GI for that, another dr for something else without getting any collaboration??

She has a positive DQ2 which means there is a possibility of celiac disease.

Hayley...how long ago did you test negative?

Was a complete celiac antibody panel done...including total serum IgA?

Have you been tested for nutrient deficiencies?

Have you removed gluten for any amount of time?

Do you have the pathology and procedural reports from the endoscopy? These can provide helpful information.

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Thanks Dee.  How do you make your kale chips?
 
@Lisa...I tested negative last July 2013.  They did the tTG and the DGP IgA and IgG and all was negative.   I started on the SCD diet probably in 2007, although I wasn't perfect, then tried the Paleo diet.  I rarely eat wheat cause I took it out of my diet.  Although occasionally I would get a chicken wrap from Wendy's.   I take a lot of vitamins.  My last blood work, my B12 was >1000, so now they are checking me for kidney disease because I have too much B12 when the excess should be excreted. 
 
However starting a couple months before the endoscopy I did eat some wheat.
 
My only health resource is the Veterans Administration hospital.  I had a endoscopy plus colonoscopy at the same time.  This is what the biopsy report said:
 
SURGICAL PATHOLOGY DIAGNOSIS

A) SMALL BOWEL, ENDOSCOPIC BIOPSY:

- BENIGN DUODENAL MUCOSA WITH MILD CHRONIC NONSPECIFIC

INFLAMMATION, VILLUS ARCHITECTURE WITHIN THE REFERENCE

(NORMAL) RANGE

ASCENDING COLON, ENDOSCOPIC BIOPSY:

- TUBULAR ADENOMA

 
Other:

Duodenal aspirate with growth c/w SIBO.

 

Thanks
Cheryl

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Thanks Dee.  How do you make your kale chips?
 
@Lisa...I tested negative last July 2013.  They did the tTG and the DGP IgA and IgG and all was negative.   I started on the SCD diet probably in 2007, although I wasn't perfect, then tried the Paleo diet.  I rarely eat wheat cause I took it out of my diet.  Although occasionally I would get a chicken wrap from Wendy's.   I take a lot of vitamins.  My last blood work, my B12 was >1000, so now they are checking me for kidney disease because I have too much B12 when the excess should be excreted. 
 
However starting a couple months before the endoscopy I did eat some wheat.
 
My only health resource is the Veterans Administration hospital.  I had a endoscopy plus colonoscopy at the same time.  This is what the biopsy report said:
 
SURGICAL PATHOLOGY DIAGNOSIS

A) SMALL BOWEL, ENDOSCOPIC BIOPSY:

- BENIGN DUODENAL MUCOSA WITH MILD CHRONIC NONSPECIFIC

INFLAMMATION, VILLUS ARCHITECTURE WITHIN THE REFERENCE

(NORMAL) RANGE

ASCENDING COLON, ENDOSCOPIC BIOPSY:

- TUBULAR ADENOMA

 
Other:

Duodenal aspirate with growth c/w SIBO.

 

Thanks
Cheryl

 

 

Hi Cheryl!

 

If you have been mostly wheat free you likely have been mostly gluten free which would make the celiac antibody tests inaccurate and could also make the damage in your intestine harder to find unless you had multiple biopsies.

 

Beyond frustrating, but I suggest you remove absolutely all gluten for at least 3 months - 6 is better to monitor symptom improvement.  

 

The alternative is full gluten challenge of at least 12 weeks to re-run the celiac antibody tests.

 

You mention the high B12...any other variance in blood...specifically your Complete Blood Count (CBC), Comprehensive Metabolic Panel (CMP) or specific nutrients tested?

 

Sorting out non-specific symptoms and diagnosing autoimmune disorders is not simple.  Hang tough!

 

ps...Just re-read your initial post -- have you been diagnosed with other AIs?  you mention 6 or 7 other diseases associated with celiac disease...which ones?

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Buy a bunch of kale from the store or pick it in the garden.  Wash if needed.  Shred off the leafy parts in bite size pieces and toss with a tablespoon of olive oil.  Sprinkle the top and bottom of the leaves with salt.  Place in 250 oven for 15 minutes.  Leave them another 10-15 minutes or until dry and crispy.

 

Alternative ideas:

 

I like Swiss chard chips even better lately.  The process is the same.

 

I use parchment paper to place the leaves on; they don't stick to it when they are done.

 

Sometimes I feel I don't want to tear the leaves apart as it is easier to flip them.  I use a pastry brush to paint on olive oil and place the huge leaves on the baking sheet.  I sprinkle both sides with salt and bake as usual.  If the stems are tough at the end I break the leafy parts off around them.

 

Enjoy!

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Well after much reading, I am thinking I will be dead long before they figure out what I have.  I thought that being dx'd with SIBO, Sjrogen's, low wbc, low protein, Osteoporosis, fatty liver disease, thyroid disease, positive ANA, and all the other problems plus a positive genetic test was helpful but nope, I'm still in the same boat.  My mom died with all the same symptoms and at the time, she was told she was causing her own IBS because she was a nervous type person...she wasn't a nervous person but that's what they said at the time was the cause of IBS.  Of course now we know, SIBO causes IBS or is IBS.  My whole family died by the time I was 40.

 

My daughter is 18 and has already started to be sick and that's the hard part, helping her get out of the chair when she's only 18 and dealing with her stomach issues and headaches, etc.

 

In May they said that there is no such thing as non-celiac gluten sensitivity, so my allergist probably didn't read the headlines but I will take the paper to him. 

 

Thanks for the help.

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The details of your endoscopy report sounded to me they might possibly  indicate celiac disease, but perhaps it is the SIBO?.  Possibly you could get a second opinion somewhere. The first stage of celiac includes lymphocyte response and some inflammation is likely.  I know that other problems can cause inflammation there.  They  mention the villi which begin to break down in early celiac and flatten later, but were considered normal. It didn't mention how many samples were taken and villi damage is sometimes missed. My question is whether sibo caused the inflammation found or if it is possible that celiac caused both.  With your list of symptoms, and even your family history, I would leave no celiac stone unturned.  The final test would be to go gluten free and see if the diet helps you.  Do all of the full panel of blood tests first.  I hope you and your daughter will find helpful answers.

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Thanks so much....SIBO and Celiac both need to avoid wheat, barley and rye, but for different reasons.  So really going gluten free helps SIBO too.

 

I just found a medical journal article that says SIBO does cause osteoporosis and can also cause mild duodenal inflammation, but then most SIBO articles also say you can be cured by antibiotics which is NOT true and they also say you will have diarrhea which is not always true either...I am constipated.  My GI doctor told me  SIBO is also related to autoimmune disorders but I can't find much info on that.  And I read that Celiac's get SIBO too so in a lot of ways they are similar in symptoms just different mechanisms.   All the women in my family were very short though and had infertility problems.  I have very short and stubby fingers and toes.  lol                                                                                                                                                                  

 

They did 5 endo samples.  The tTG was done when I was off wheat.  The DPG IgA and IgG were done after I had been eating wheat, although I was used to not eating bread so I didn't eat it everyday but I feel it was enough to produce a positive blood test, but I'm no expert.  I was tested after years of trying to help myself through diet.

 

And another bad thing is this GI doctor I saw, said no matter whether it's celiac or sibo, just change your diet.  Well that's sooooo easy for him to say, just like it was no big deal, no matter the suffering already endured or the permanent damage already done.  sighs.....

 

And I'll ask the allergy doctor about the villi.  He was trying to get me to see a GI doctor who specializes in celiac testing but the VA wouldn't allow it so then he pushed for the genetic testing and it went through.

 

Cheryl

 

 

 

 



 

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Cheryl........here is an article that may help explain some of the genetic stuff but the fact is, you have a predisposition for Celiac. Without any Celiac genes, the odds go way down, almost to zero.  https://www.questdiagnostics.com/testcenter/testguide.action?dc=TS_HLA_Celiac

 

You have Sjogren's (so do I), osteoporosis, lupus, low WBC (so do I, and that's common for someone with multiple autoimmune diseases), thyroid issues (I have Hashi's), positive ANA ( which is not indicative of anything other to say you have general inflammation in your body...and so do I), liver problems........you get the picture, I hope, of what I am trying to say.  With all of these health problems and a positive Celiac gene, why is it that you feel that you cannot change your diet, if testing has been inconclusive?  That can happen and it was probably because they didn't test correctly or, as you stated, you were off wheat and that may have thrown the test. If your life has been altered so drastically that you cannot work, why do you feel it is hard to change your diet to see if this is the problem?  It really is not hard at all to follow a gluten-free diet, just inconvenient at times.

 

I was sick as sick is when I was diagnosed.  I had to get within weeks of dying before I figured it out and asked for the blood work to be done.  Once I went gluten-free, my recovery was nothing short of a miracle...but it did take a total of 3 years for complete recovery.  I was 46 years old at the time.  You will never get the answers you are looking for at this point from the medical establishment.  This is nothing new.  But with everything in your medical history pointing towards Celiac, and the gene testing to back it up, you most likely will die if you do not start the diet and stick with it from now on.  I think down the road you will see this is true, once you start feeling better.  BTW,,,my ANA was sky high 9 years ago and it has slowly been coming down the longer I am gluten-free, even with 3 other AI diseases to boot.  It is not normal but a world of difference better.  I feel normal and healthy.

 

SIBO does not cause all these other AI problems you have but Celiac does.  SIBO is probably the result of long undiagnosed Celiac.  Time to start the diet and move on and heal!

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Thanks Gemini....I changed my diet in the past, but I was still suffering from food allergies.  Of course I didn't know that at the time.  I even switched to gluten free oats but I was still having problems with corn, rice, dairy, potatoes, beans, fish, tomatoes and you know it's hard to tell what's going on when you have a lot of foods that are bothering you, and at this point the doctors told me I had IBS, nothing more, and I had to live with it.  My migraines were ruining my life.  I had rashes all the time and finally was sent to an allergist.  I've been on the SCD, GAPS and the Paleo Diet but none of those helped entirely because I was also battling food allergies and food sensitivities.

 

I get so sick, that I have to listen to my body, or it will punish me, I know.

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I know that you have lots of foods that bother you--have you tried some of the more unusual foods to see if you can tolerate them? 

 

Grains: Kaniwa (NOT the same as quinoa), teff, millet, Job's Tears, amaranth

 

Veggies: Bok choy, kohlrabi, kale, swiss chard, etc.

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Thanks Gemini....I changed my diet in the past, but I was still suffering from food allergies.  Of course I didn't know that at the time.  I even switched to gluten free oats but I was still having problems with corn, rice, dairy, potatoes, beans, fish, tomatoes and you know it's hard to tell what's going on when you have a lot of foods that are bothering you, and at this point the doctors told me I had IBS, nothing more, and I had to live with it.  My migraines were ruining my life.  I had rashes all the time and finally was sent to an allergist.  I've been on the SCD, GAPS and the Paleo Diet but none of those helped entirely because I was also battling food allergies and food sensitivities.

 

I get so sick, that I have to listen to my body, or it will punish me, I know.

i was very sick before being diagnosed, too.  went to all kinds of doctors and kept adding foods to my 'no-no' list until i had hardly anything left to eat.  :(  because they *were* all bothering me because my intestines were so damaged.  by cutting out the gluten, it has allowed my gut to heal and now i can eat many things that i previously couldn't.  like gem, i was at death's door, so it took a long time to heal to the point of 'normal' digestion.  i figure if it took that long (25 years) to do all that damage, i better give it some time to heal.  you may not have as many food allergies and sensitivities as you think if you have celiac and your gut is damaged and inflamed.  

 

i do not miss the migraines.  i have not had one in years  :)  and i don't catch every darn flu bug and virus that's going around.  i think i've only been sick once since dx.  most of the time, i'm the well person in a sea of sickies (i watch alot of kids lolz) and that was *never* the norm for me.  if you have celiac, being gluten free will save your life and save your quality of life.  good luck and good healing to you :) 

 

Grains: Kaniwa (NOT the same as quinoa)

lolz - alright, already   ^_^  i don't know what kaniwa is   :o  that was just my best guess  ^_^

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Hi  Ruth,

No I've not tried Kaniwa...never heard of that ever.  I live in the boonies so Walmart is my only grocery.  I used to be a good cook...age helps with that.  lol

I make my own mayo and salad dressings since I'm allergic to dairy, so I eat a lot of salads.  Breakfast is hard and esp now without butter to scramble my eggs in.

I eat just meat sometimes, which is not good I know.   Most baking recipes use rice which I'm allergic to.  I had a new cookbook with the diff grains but I've misplaced it.  Will have to find that.... :)

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i was very sick before being diagnosed, too.  went to all kinds of doctors and kept adding foods to my 'no-no' list until i had hardly anything left to eat.   :(  because they *were* all bothering me because my intestines were so damaged.  by cutting out the gluten, it has allowed my gut to heal and now i can eat many things that i previously couldn't.  like gem, i was at death's door, so it took a long time to heal to the point of 'normal' digestion.  i figure if it took that long (25 years) to do all that damage, i better give it some time to heal.  you may not have as many food allergies and sensitivities as you think if you have celiac and your gut is damaged and inflamed.  

 

i do not miss the migraines.  i have not had one in years   :)  and i don't catch every darn flu bug and virus that's going around.  i think i've only been sick once since dx.  most of the time, i'm the well person in a sea of sickies (i watch alot of kids lolz) and that was *never* the norm for me.  if you have celiac, being gluten free will save your life and save your quality of life.  good luck and good healing to you :)

 

lolz - alright, already   ^_^  i don't know what kaniwa is   :o  that was just my best guess  ^_^

 

Good advice, Arlene!!!!!!   You are so smaht!  It's nice to be able to think without the brain on gluten thing!    ;)

 

As for the IBS diagnosis, Cheryl......IBS is not a diagnosis so when they tell you that your bowel is irritated, the best thing to fire back with is that you know that and want to know why!  Otherwise they do what they do.......symptom treat and you never get better.  Please try a strict gluten-free diet for at least 6 months.  Arlene is correct......that may be the underlying cause of why you have so many food issues.  It sounds like you are one of us!

 

One other question.....do you take many meds for your health problems?  If you do, some of them may have interfered with the blood testing.

Just a thought......

 

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Thanks Arlene, I did that too.  My daughter would bring home this really mild cold, she would have a sore throat and the sniffles.  I would get really sick from it, then it turned into a sinus infection, then it turned into bronchitis, and by that time I'd been sick for at least 3 weeks and was so run down it would take forever to recover and it was a vicious cycle of being sick.  And people would think I made up being that sick for so long, and they got tired of hearing it which only stressed me out more.  And this is why I thought all along I did have celiac because I was sick all the time and my bad food list got longer and longer but you can't argue with blood tests. 

 

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Thanks Arlene, I did that too.  My daughter would bring home this really mild cold, she would have a sore throat and the sniffles.  I would get really sick from it, then it turned into a sinus infection, then it turned into bronchitis, and by that time I'd been sick for at least 3 weeks and was so run down it would take forever to recover and it was a vicious cycle of being sick.  And people would think I made up being that sick for so long, and they got tired of hearing it which only stressed me out more.  And this is why I thought all along I did have celiac because I was sick all the time and my bad food list got longer and longer but you can't argue with blood tests.

The blood tests are not perfect, especially when you were gluten light.

I am not saying you have celiac disease, only that it remains a very real possibility.

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Good advice, Arlene!!!!!!   You are so smaht!  It's nice to be able to think without the brain on gluten thing!    ;)

 

As for the IBS diagnosis, Cheryl......IBS is not a diagnosis so when they tell you that your bowel is irritated, the best thing to fire back with is that you know that and want to know why!  Otherwise they do what they do.......symptom treat and you never get better.  Please try a strict gluten-free diet for at least 6 months.  Arlene is correct......that may be the underlying cause of why you have so many food issues.  It sounds like you are one of us!

 

One other question.....do you take many meds for your health problems?  If you do, some of them may have interfered with the blood testing.

Just a thought......

 

 

 

i was very sick before being diagnosed, too.  went to all kinds of doctors and kept adding foods to my 'no-no' list until i had hardly anything left to eat.   :(  because they *were* all bothering me because my intestines were so damaged.  by cutting out the gluten, it has allowed my gut to heal and now i can eat many things that i previously couldn't.  like gem, i was at death's door, so it took a long time to heal to the point of 'normal' digestion.  i figure if it took that long (25 years) to do all that damage, i better give it some time to heal.  you may not have as many food allergies and sensitivities as you think if you have celiac and your gut is damaged and inflamed.  

 

i do not miss the migraines.  i have not had one in years   :)  and i don't catch every darn flu bug and virus that's going around.  i think i've only been sick once since dx.  most of the time, i'm the well person in a sea of sickies (i watch alot of kids lolz) and that was *never* the norm for me.  if you have celiac, being gluten free will save your life and save your quality of life.  good luck and good healing to you :)

 

lolz - alright, already   ^_^  i don't know what kaniwa is   :o  that was just my best guess  ^_^

 

 

The blood tests are not perfect, especially when you were gluten light.

I am not saying you have celiac disease, only that it remains a very real possibility.

 

 

WHATEVER THESE 3 WOMEN SAY...I WOULD SAY TOO....I ADMIT, I AM BEING LAZY HERE  ^_^ FOR ONCE...BUT I KNOW THESE CELIAC-SAVVY CHICKS AND  I ARE ALWAYS ON THE SAME PAGE...

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Thanks Arlene, I did that too.  My daughter would bring home this really mild cold, she would have a sore throat and the sniffles.  I would get really sick from it, then it turned into a sinus infection, then it turned into bronchitis, and by that time I'd been sick for at least 3 weeks and was so run down it would take forever to recover and it was a vicious cycle of being sick.  And people would think I made up being that sick for so long, and they got tired of hearing it which only stressed me out more.  And this is why I thought all along I did have celiac because I was sick all the time and my bad food list got longer and longer but you can't argue with blood tests. 

 

 

 

exactly!  :(  plus, i had bacterial infections (bronchitis, pneumonia, sinus infection, etc) so many times, they gave me broad spectrum antibiotics, which kills *all* the bacteria - including the 'good bugs' that help to keep your gut nice and healthy.  many of us take probiotics and/or digestive enzymes to help us re-populate the good bugs and to provide enzymes helpful to digest our food.   

 

with celiac, it is the gift that keeps on giving - it is systemic, so it messes up all your systems.  if your body can't get the nutrients from the food you eat because your gut is damaged, you don't get the vitamins and minerals your body needs to heal itself and keep your immunity strong.   and for strength and energy :)  i was like the walking dead - now i'm running circles around the grandkids.  

 

gem is right about the ibs 'diagnosis' - i also heard 'colitis' a bunch of times although nobody told me what was causing it.  i didn't question it, because i didn't know anything could be done about it aside from taking a bunch of meds (that never worked!)  when i had my celiac blood test, the doc had (mistakenly, go figure...) me already off gluten, so of course it came back negative.  ski-lisa has a good point, also, some meds will skew the test as well.  

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