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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Enterolab Results In
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Well after 2 months on this forum and almost 13 years of bad health, I think I have a little confirmation of gluten intolerance in my daughter. However, the diet has been the best confirmation.

Her IgA results are somewhat negated because her total IgA serum is low 43 and normal is 68-300 (this was checked twice) but Enterlab said to call them when the results are in so they could help interpret. I dont' think I need to do that.

Gluten Sensitivity Stool Panel

Fecal Anti-gliadin IgA 7 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 11 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score 490 Units (Normal Range is less than 300 Units)

Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

Isn't DQ1,1 also associated with Celiac Disease???? Any comments and help welcome!

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Well, I had no doubt your daughter was gluten intolerant from all you have told me. Looks like Mom and Dad are gluten sensitive (at least) as well.

The fecal fat score indicates malabsorption of some kind is going on! Pancreatic enzyme deficiency perhaps??--What did the report say?

Genetic Testing for Celiac Disease by Edwin Liu, MD Jan 2006

Genetic testing is available that can show whether you carry the genetic predisposition for developing gluten sensitivity or celiac disease. It is not diagnostic of active disease, but it may provide supportive information in cases where someone is symptomatic, but fails to meet the rigid criteria for a solid celiac diagnosis. It is also used to rule out Celiac Disease in those who do not carry the genetic predisposition for Celiac Disease.

95% of all those with celiac disease will show one of two genetic markers, HLA DQ2 (90%) or HLA DQ8 (5%). As many as thirty percent of the population carry this genetic makeup but only one percent develop Celiac Disease.

Another marker, HLA DQ1, has been identified by both Dr. Kenneth Fine and Dr. Marios Hadjivassilou as being associated with a Non-Celiac Gluten Sensitivity. While those who carry HLA DQ1 rarely show villous atrophy, it does happen on occasion. Since about 1-2% of biopsy proven celiacs carry the HLA DQ1 gene, it may be questionable practice to rule out Celiac Disease solely by the absence of the main genes (HLA DQ2 or HLA DQ8).

While HLA DQ1 is not recognized by most celiac experts as being associated with celiac disease, Dr. Hadjivassilou has found HLA DQ1 in about 20% of his gluten sensitive (antigliadin positive) neurological patients. The remaining 80% have either HLA DQ2 or HLA DQ8 consistent with the celiac population.

From "Gluten sensitivity as a neurological Illness" by M Hadjivassiliou, R A Grunewald, G A B Davies-Jones:

"Within the group of patients with neurological disease and gluten sensitivity (defined by the presence of anti-gliadin antibodies) we have found a similar HLA association to that seen in patients with celiac disease: 70% of patients have the HLA DQ2 (30% in the general population), 9% have the HLA DQ8, and the remainder have HLA DQ1. The finding of an additional HLA marker (DQ1) seen in the remaining 20% of our patients may represent an important difference between the genetic susceptibility of patients with neurological presentation to those with gastrointestinal presentation within the range of gluten sensitivity."

If it walks like a duck, quacks like a duck.....

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Well, I had no doubt your daughter was gluten intolerant from all you have told me. Looks like Mom and Dad are gluten sensitive (at least) as well.

Genetic Testing for Celiac Disease by Edwin Liu, MD Jan 2006

Genetic testing is available that can show whether you carry the genetic predisposition for developing gluten sensitivity or celiac disease. It is not diagnostic of active disease, but it may provide supportive information in cases where someone is symptomatic, but fails to meet the rigid criteria for a solid celiac diagnosis. It is also used to rule out Celiac Disease in those who do not carry the genetic predisposition for Celiac Disease.

95% of all those with celiac disease will show one of two genetic markers, HLA DQ2 (90%) or HLA DQ8 (5%). As many as thirty percent of the population carry this genetic makeup but only one percent develop Celiac Disease.

Another marker, HLA DQ1, has been identified by both Dr. Kenneth Fine and Dr. Marios Hadjivassilou as being associated with a Non-Celiac Gluten Sensitivity. While those who carry HLA DQ1 rarely show villous atrophy, it does happen on occasion. Since about 1-2% of biopsy proven celiacs carry the HLA DQ1 gene, it may be questionable practice to rule out Celiac Disease solely by the absence of the main genes (HLA DQ2 or HLA DQ8).

While HLA DQ1 is not recognized by most celiac experts as being associated with celiac disease, Dr. Hadjivassilou has found HLA DQ1 in about 20% of his gluten sensitive (antigliadin positive) neurological patients. The remaining 80% have either HLA DQ2 or HLA DQ8 consistent with the celiac population.

From "Gluten sensitivity as a neurological Illness" by M Hadjivassiliou, R A Grunewald, G A B Davies-Jones:

"Within the group of patients with neurological disease and gluten sensitivity (defined by the presence of anti-gliadin antibodies) we have found a similar HLA association to that seen in patients with celiac disease: 70% of patients have the HLA DQ2 (30% in the general population), 9% have the HLA DQ8, and the remainder have HLA DQ1. The finding of an additional HLA marker (DQ1) seen in the remaining 20% of our patients may represent an important difference between the genetic susceptibility of patients with neurological presentation to those with gastrointestinal presentation within the range of gluten sensitivity."

If it walks like a duck, quacks like a duck.....

Great info and one of her biggest issues is neuro. She has occipital based seizures and a few other weird ataxia issues.

Well, even though the medical community doesn't really recognize DQ 1 as a gluten sensitive gene, it does make me feel better. I know that a few docs believe, but not many!

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Great info and one of her biggest issues is neuro. She has occipital based seizures and a few other weird ataxia issues.

Well, even though the medical community doesn't really recognize DQ 1 as a gluten sensitive gene, it does make me feel better. I know that a few docs believe, but not many!

I remember! And that is why I looked for the nuero connection article ;)

The fecal fat score indicates malabsorption of some kind is going on! Pancreatic enzyme deficiency as well perhaps??

This can means nutritional deficiencies in her, too.

Chronic fat malabsorption is associated with osteoporosis and other nutritional deficiencies-- so you will need to watch this.

But I think staying gluten-free is the best thing you can do!

Congrats! I know how hard you have worked to get J. well.

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I remember! And that is why I looked for the nuero connection article ;)

The fecal fat score indicates malabsorption of some kind is going on! Pancreatic enzyme deficiency perhaps??--What did the report say?

I sent it to you in a PM. However, her fecal fat value 490 and typical results for pancreatic issue is 600-1000. But I will bring it up to her GI. what a joke that will be.

I think if I bring this enterolab report to her, she will blow me off.

Anyone else have any luck in convincing their docs with the enterolab reports?

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Well after 2 months on this forum and almost 13 years of bad health, I think I have a little confirmation of gluten intolerance in my daughter. However, the diet has been the best confirmation.

Her IgA results are somewhat negated because her total IgA serum is low 43 and normal is 68-300 (this was checked twice) but Enterlab said to call them when the results are in so they could help interpret. I dont' think I need to do that.

Gluten Sensitivity Stool Panel

Fecal Anti-gliadin IgA 7 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 11 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score 490 Units (Normal Range is less than 300 Units)

Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

Isn't DQ1,1 also associated with Celiac Disease???? Any comments and help welcome!

Enterolab usually includes an interpretation with your test results. That should answer your questions about the gene test. However, you can also call or email the lab and ask questions. They were very helpful with answering my questions.

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I have two DQ5 too, and I have DH and I am very gluten sensitive.

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I have two DQ5 too, and I have DH and I am very gluten sensitive.

Hi Nora, I believe my daughter is DQ 1, 1 based on the above results. Am I wrong?

Thanks!

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Hi Nora, I believe my daughter is DQ 1, 1 based on the above results. Am I wrong?

Thanks!

OK I get it now. She is DQ 5,5 which is a part of DQ 1,1

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Hi Nora, I believe my daughter is DQ 1, 1 based on the above results. Am I wrong?

Thanks!

Your daughter is DQ5. On the Enterolab reports, the numbers in parenthesis are the modern designations. DQ1 is an old serotype that got split more accurately into DQ5 and DQ6 in the '90s and isn't used much anymore.

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Your daughter is DQ5. On the Enterolab reports, the numbers in parenthesis are the modern designations. DQ1 is an old serotype that got split more accurately into DQ5 and DQ6 in the '90s and isn't used much anymore.

Thank you Skylark. I have a question for you. I know that GIs don't really believe in the fecal ttg results as they haven't been properly correlated to blood work through clinical trials. However, since my daughter has low total IgA and she came up a bit elevated on tTg IgA, do you think that holds any weight? I talked to the lab and they were surprised she came up elevated with a low serum total IgA. They said that made it more significant and that I should discuss it with the GI.

They also state that the GI can't really dispute the the fecal fat result. She obviously is not absorbing fat and possibly other nutrients. Do you agree that the GI may actually consider that fecal result significant???

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Legally, your doctor cannot diagnose with a test that has not been validated. It opens him to enormous malpractice issues. Besides, fecal anti-gliadin IgA alone doesn't predict diddlysquat. I keep trying to get people to look at the slides posted on the Enterolab website but nobody listens.

Fecal TTG is a more useful test but remember that Dr. Fine developed fecal TTG as a test for microscopic colitis, and that it can also appear in Crohn's as well as celiac. Fecal fat is similarly a similarly nonspecific measure of malabsorption. Without any positive results on specific tests for celiac and without celiac risk genes, your doctor can not assume gluten intolerance is the issue. To further cloud the water, some people with inflammatory bowel diseases improve off gluten. Other issues need to be ruled out first.

The TTG result is certainly interesting but what your daughter needs is an IgG celiac panel and an endoscopy. Did she not get proper testing before she went off gluten?

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Legally, your doctor cannot diagnose with a test that has not been validated. It opens him to enormous malpractice issues. Besides, fecal anti-gliadin IgA alone doesn't predict diddlysquat. I keep trying to get people to look at the slides posted on the Enterolab website but nobody listens.

Fecal TTG is a more useful test but remember that Dr. Fine developed fecal TTG as a test for microscopic colitis, and that it can also appear in Crohn's as well as celiac. Fecal fat is similarly a similarly nonspecific measure of malabsorption. Without any positive results on specific tests for celiac and without celiac risk genes, your doctor can not assume gluten intolerance is the issue. To further cloud the water, some people with inflammatory bowel diseases improve off gluten. Other issues need to be ruled out first.

The TTG result is certainly interesting but what your daughter needs is an IgG celiac panel and an endoscopy. Did she not get proper testing before she went off gluten?

Good info. Our GI went about things backward. She gene tested her first (low total IgA) and since she is not DQ 2 or DQ 8 (3) positive, she would not do the endoscopy. She also had a negative IgG tTg, but I don't know what her total IgG was.

She is improving on gluten free diet but the GI told me that since she doesn't have the genes, that she didn't need to be gluten free. I should put her on high dose prilosec instead.

All I really want is some blood work for malabsorption of the basics like folate, B12, etc. I would also like a bone density test since she has broken her wrist 3 X already while doing things that were fairly benign.

Skylark, I am assuming you can have malabsorption and inflammation in the gut due to gluten intolerance (non-celiac), correct? Or should I be pushing to see if she has something like Crohn's Disease or Ulcerative Colitis?

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With her current results you cannot rule out Crohn's or ulcerative colitis. Yes, malabsorption is possibly with non-celiac gluten sensitivity.

Total IgG isn't usually tested. Low IgA is a risk factor for celiac. Is the only IgG test she got TTG? I would be nice if your daughter had gotten an endoscopy but she's gluten-free now so it wouldn't be reliable.

You might push harder to exclude diagnoses other than gluten intolerance in a few months if she doesn't keep responding to the gluten-free diet. Right now it sounds like you're on the right track. If your daughter had a LOT of symptoms of Crohn's or ulcerative colitis one would hope her GI would have picked it up. Obviously high-dose prilosec is not where you want to go. :blink: Has her GI even tested to see if she has too much stomach acid?

If your GI isn't willing to do vitamin tests based on the fecal fat evidence of malabsorption and the fractures, her primary care doctor might.

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With her current results you cannot rule out Crohn's or ulcerative colitis. Yes, malabsorption is possibly with non-celiac gluten sensitivity.

Total IgG isn't usually tested. Low IgA is a risk factor for celiac. Is the only IgG test she got TTG? I would be nice if your daughter had gotten an endoscopy but she's gluten-free now so it wouldn't be reliable.

You might push harder to exclude diagnoses other than gluten intolerance in a few months if she doesn't keep responding to the gluten-free diet. Right now it sounds like you're on the right track. If your daughter had a LOT of symptoms of Crohn's or ulcerative colitis one would hope her GI would have picked it up. Obviously high-dose prilosec is not where you want to go. :blink: Has her GI even tested to see if she has too much stomach acid?

If your GI isn't willing to do vitamin tests based on the fecal fat evidence of malabsorption and the fractures, her primary care doctor might.

She had the Deamidated Gliadin Abs, IgG and tTg IgG which were both negative.

I have run clinical studies in UC and Crohn's and she doesn't seem to have those symptoms but I will ask the GI if they can be ruled out.

Hopefully she will run the labs that I ask for.

One last question, as I stated her GI wanted her on priolosec 40mg QD. I didn't do it and she is going to be mad. Fecal fat has nothing to do with potential acid reflux right? I can find no link online. Just a note that my daughter has no symptoms of reflux when gluten-free. NONE

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Malabsorption occurs in other conditions besides Celiac, but J has done well off gluten and reacts pretty violently when glutened --as you have reported.

It arises from other conditions, among them:

Whipple's Disease

Tropical sprue

Crohn's disease

Short gut syndrome

AIDS

Eosinophilic gastroenteritis

Gut surgeries

Here:

http://www.cleveland...tive-disorders/

THIS is a legitimate question for your doctor, too bad if she does not like it.

Resolution of acid reflux OFF gluten (and we can almost all relate to that one!) proves your point. Many of us took those drugs for years only to discover we had LOW stomach acid. :rolleyes:

Perhaps your primary care doc can run lab tests for you?

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Malabsorption occurs in other conditions besides Celiac, but J has done well off gluten and reacts pretty violently when glutened --as you have reported.

It arises from other conditions, among them:

Whipple's Disease

Tropical sprue

Crohn's disease

Short gut syndrome

AIDS

Eosinophilic gastroenteritis

Gut surgeries

Here:

http://www.cleveland...tive-disorders/

THIS is a legitimate question for your doctor, too bad if she does not like it.

Resolution of acid reflux OFF gluten (and we can almost all relate to that one!) proves your point. Many of us took those drugs for years only to discover we had LOW stomach acid. :rolleyes:

Perhaps your primary care doc can run lab tests for you?

Those all sound horrible! I am hoping just for gluten intolerance, lol.

We have an appt with the GI in two weeks so I think that should work. Hopefully she will be puzzled by this as well.

She hasn't had her stomach acid tested. The GI said, that the high dose priolosec would tell her if that was the issue. So she wanted to dose her full of prilosec for 3 months to see if that worked instead of testing her. ARGH.

I think they need to rule out pancreatitis or some other pancreatic issue.

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Gluten can cause acid reflux in gluten-sensitive folks. More evidence for gluten intolerance. Pancreatic insufficiency is common in folks with gluten intolerance/celiac.

There is an association between fecal fat and reflux but it's not what you might think. Low stomach acid can cause reflux, poor production of bile and pancreatic enzymes, and malabsorption. You mention pancreatic insufficiency - stomach acid stimulates the production of pancreatic enzymes so in a low acid situation the pancreas doesn't work well. In that case a PPI is exactly the wrong thing to give. All the inflammatory bowel diseases including celiac, gluten intolerance, UC, and Crohn's can cause fat malabsorption too.

Besides, Prilosec increases the risk of fractures in older folks and your daughter is already having fractures. That alone is justification to refuse the prescription.

http://www.npr.org/blogs/health/2010/05/26/127132723/fda-warns-about-bone-risks-from-heartburn-drugs

I'm not sure I think much of your GI. Fortunately the reflux is moot since it's gone away gluten-free.

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Perfect! Sky is echoing some things we have talked about in your other thread about Prilosec. :) and explaining what I said in the

PM about my own low stomach acid and pancreatic insufficiency.

(She may not have seen that other thread ).

And, she is reinforcing Exactly what you and I have discussed--and Sylark is extremely celiac/gluten savvy and I have asked for her help many times--so it looks like WE are all in accord. :)

Except for the GI doctor.... <_< hmmm...

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I have two DQ5 too, and I have DH and I am very gluten sensitive.

Thanks for the info Nora.

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Gluten can cause acid reflux in gluten-sensitive folks. More evidence for gluten intolerance. Pancreatic insufficiency is common in folks with gluten intolerance/celiac.

There is an association between fecal fat and reflux but it's not what you might think. Low stomach acid can cause reflux, poor production of bile and pancreatic enzymes, and malabsorption. You mention pancreatic insufficiency - stomach acid stimulates the production of pancreatic enzymes so in a low acid situation the pancreas doesn't work well. In that case a PPI is exactly the wrong thing to give. All the inflammatory bowel diseases including celiac, gluten intolerance, UC, and Crohn's can cause fat malabsorption too.

Besides, Prilosec increases the risk of fractures in older folks and your daughter is already having fractures. That alone is justification to refuse the prescription.

http://www.npr.org/blogs/health/2010/05/26/127132723/fda-warns-about-bone-risks-from-heartburn-drugs

I'm not sure I think much of your GI. Fortunately the reflux is moot since it's gone away gluten-free.

Now this is interesting. I think I am going to approach the GI with the fecal fat lab and just ask her what she thinks could cause it. It truly needs to be looked into. That is so interesting about the low stomach acid. Irish did mention that too. It is also interesting to me that she has tTg IgA even though she has low serum IgA. I may ask the doc about that too. Just to get her medical opinion. I am quite certain she won't care about the genes but we will see. I am going to go in and give her the benefit of the doubt and see how she responds.

IrishHeart: thanks again! At school today they offered the kids red vines to celebrate the last day of school. Jordan is just coming off getting glutened and she knew better than to eat it if she didn't know for sure (of course it is loaded with gluten). Good girl!

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I wouldn't bank on that TTG IgA being correct, and your doc may tell you this as well. Even the most careful labs sometimes make mistakes. That's why lab slips will come back with a "repeat tested" note sometimes on out-of-range labs and why a doctor's usual response to an inconsistent lab is usually to either disregard it or repeat the test. Unfortunately Enterolab didn't know about the low IgA when they ran the sample so they probably didn't check it again to verify the result.

I will be curious to hear what your doctor says about the fecal fat.

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IrishHeart: thanks again! At school today they offered the kids red vines to celebrate the last day of school. Jordan is just coming off getting glutened and she knew better than to eat it if she didn't know for sure (of course it is loaded with gluten). Good girl!

Good girl indeed! okay, this is sooo weird, but when I was very, very ill back in 2009, all I wanted was Twizzlers and Sun Chips. I ate that crap by the bag full and I was sick every minute. I had NO idea that licorice contained gluten before all this. I was actually craving it. I could not eat anything or keep it in, but I wanted Twizzlers. Dumb. Hubs thought me insane but appeased me because it was all I asked for.

I was thinking about this very thing after your J. was Glutened by the cc from snacks and at the party last week and wondered if you knew about Twizzlers. I made a note to tell you about it when I was PMing you because believe it or not, I woke up this AM thinking--tell K about the Twizzlers---and here you are telling me!! :lol:

okay, I sounded a bit crazy there. :lol:

Anyway, give her big kuddos for knowing to say NO!! all right, J!!

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I wouldn't bank on that TTG IgA being correct, and your doc may tell you this as well. Even the most careful labs sometimes make mistakes. That's why lab slips will come back with a "repeat tested" note sometimes on out-of-range labs and why a doctor's usual response to an inconsistent lab is usually to either disregard it or repeat the test. Unfortunately Enterolab didn't know about the low IgA when they ran the sample so they probably didn't check it again to verify the result.

I will be curious to hear what your doctor says about the fecal fat.

After I sent the sample in, i called to tell them about the IgA total serum being low. However, I don't think the GI will care either way!

It probably doesn't matter anyway, it is the fecal fat that I want addressed, right?

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Good girl indeed! okay, this is sooo weird, but when I was very, very ill back in 2009, all I wanted was Twizzlers and Sun Chips. I ate that crap by the bag full and I was sick every minute. I had NO idea that licorice contained gluten before all this. I was actually craving it. I could not eat anything or keep it in, but I wanted Twizzlers. Dumb. Hubs thought me insane but appeased me because it was all I asked for.

I was thinking about this very thing after your J. was Glutened by the cc from snacks and at the party last week and wondered if you knew about Twizzlers. I made a note to tell you about it when I was PMing you because believe it or not, I woke up this AM thinking--tell K about the Twizzlers---and here you are telling me!! :lol:

okay, I sounded a bit crazy there. :lol:

Anyway, give her big kuddos for knowing to say NO!! all right, J!!

Isn't strange what we crave? Jordan was sick from CC and craved rice krispie treats. She ate a ton of them on Sunday and missed school on Monday with all the old symptoms. Funny.

I learned about twizzlers and licorice from my neighbor. They poisoned their son twice with twizzlers and licorice. So that one is stuck in my head.

However, I will take any tips you can think of! Thanks for thinking of me!

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