Levels Of Celiac?

[1974girl]

I am a tad confused and hope someone can help explain this. Are there celiacs who don't have damage from Cross Contamination? Some of you react and others do not. My dd doesn't. I ask this because if just a tad can do damage...then why do you have to eat 4 pieces of bread a day for months for a gluten challenge? Why not just one? If one piece doesn't cause enough damage to be detected under a microscope, then why not let non-sensitive/asymptomatic celiacs eat it if it doesn't bother them? I am going stir crazy trying thinking the world is a dangerous place for my dd and if she gets a crumb, she could do damage....yet the doctors say "4 pieces of toast a day for us to test your other daughter". I am so confused. If a little can do damage, couldn't they see that without me shoving toast down dd #2?

[dani nero]

Good question. I too would like to know

[Adalaide]

Whether or not a very small amount of gluten causes symptoms, it doesn't change the fact that it will cause damage to your body. I suspect, but am not certain, that the reason they say to eat a ton of bread rather than a little is because they need to be able to find and biopsy the damage. You may not notice if you come out of the grocery store and someone parked next to you opened their door and caused a tiny scratch. If there's a small amount of damage, they'll never see it. On the other hand if someone crashed a 737 into the parking lot it would be pretty noticeable. The doctor needs a complete wreck of your intestines or you could get a false negative.

[frieze]

Whether or not a very small amount of gluten causes symptoms, it doesn't change the fact that it will cause damage to your body. I suspect, but am not certain, that the reason they say to eat a ton of bread rather than a little is because they need to be able to find and biopsy the damage. You may not notice if you come out of the grocery store and someone parked next to you opened their door and caused a tiny scratch. If there's a small amount of damage, they'll never see it. On the other hand if someone crashed a 737 into the parking lot it would be pretty noticeable. The doctor needs a complete wreck of your intestines or you could get a false negative.

lol, geesh woman, I think a Piper Cherokee would be big enough!

Also, degree of CC does not = degree of symptoms does not = degree of damage. Hence the term "silent celiac."

[beachbirdie]

I am a tad confused and hope someone can help explain this. Are there celiacs who don't have damage from Cross Contamination? Some of you react and others do not. My dd doesn't. I ask this because if just a tad can do damage...then why do you have to eat 4 pieces of bread a day for months for a gluten challenge? Why not just one? If one piece doesn't cause enough damage to be detected under a microscope, then why not let non-sensitive/asymptomatic celiacs eat it if it doesn't bother them? I am going stir crazy trying thinking the world is a dangerous place for my dd and if she gets a crumb, she could do damage....yet the doctors say "4 pieces of toast a day for us to test your other daughter". I am so confused. If a little can do damage, couldn't they see that without me shoving toast down dd #2?

What Adelaide said. I love the comparison to the 747 in the parking lot.

The damage is not always digestive/intestinal. That doesn't change the fact that in a celiac, there IS an active autoimmune response underway, the body IS attacking itself in other places. For some people, celiac is a skin disease, Dermatitis Herpetiformis. For others, celiac causes neurological damage. Many is the celiac who was very positive as far as bloodwork goes, but had negative biopsy. I don't have the research at hand and I'm in kind of a hurry, but there is much evidence supporting the idea that celiac people with other autoimmune conditions like Hashimoto's Thyroiditis, have many fewer celiac symptoms and do NOT show much intestinal damage.

Not everyone has the immediate reactions to gluten that the super sensitive manifest, but gluten still causes an inflammation reaction that stays with the body long after the gluten has gone. Inflammation is a key to many disease processes such as many cancers.

There is a guy doing lots of research on this, you might want to read some of his stuff Open Original Shared Link.

[Takala]

Many people become more sensitive to gluten over time, once they are off of it, no one yet understands why this happens, but it is real.

[1974girl]

I read that link today! Maybe you posted it somewhere else? Anyway, I got grossed out by the "fecal transplants" and my SIL is studying that in pharmacy school right now. Ok, I would have to be very, very sick to get an enima that puts in someone elses poop. I sit her perfectly healthy at the moment. But my husband said "If that cured DD of celiac, would you do it?" Well, absolutly! That's my kid...cure her anyway possible! (The blog was NOT saying it cured celiac by any means...my husband was just playing what if.) Apparently it is used in C-Diff.

I guess the car scratch made sense. I just got dinged really bad so I get it. Noticed it right away!

I understand that no symptoms do not equal no damage. I totally get that. I was just thinking that one piece of toast a day would be enough damage on a celiac to "see" on a biopsy. They don't test for inflamation other places...they just do that "gold standard" biopsy.

[1974girl]

Oh, and my dd has hashimotos! She has had it for 4 years. They tested for celiac at that time and it was negative so I believe she had Hashi's first. I have heard (not sure if it is true) but that your second auto-immune disease will not be as strong sometimes. She stopped growing with Hashis for about a year before they figured it out. Maybe that is why she only has "simplification" at her biopsy. Technically, some doctors wouldn't even call it celiac because it was just blunting and not total villi destruction. Thankfully, our doctor took genes and blood into consideration. We got a 2nd opinion just in case and she also said consider it celiac. I wish all doctors were that way!

[pricklypear1971]

I read that link today! Maybe you posted it somewhere else? Anyway, I got grossed out by the "fecal transplants" and my SIL is studying that in pharmacy school right now. Ok, I would have to be very, very sick to get an enima that puts in someone elses poop. I sit her perfectly healthy at the moment. But my husband said "If that cured DD of celiac, would you do it?" Well, absolutly! That's my kid...cure her anyway possible! (The blog was NOT saying it cured celiac by any means...my husband was just playing what if.) Apparently it is used in C-Diff.

I guess the car scratch made sense. I just got dinged really bad so I get it. Noticed it right away!

I understand that no symptoms do not equal no damage. I totally get that. I was just thinking that one piece of toast a day would be enough damage on a celiac to "see" on a biopsy. They don't test for inflamation other places...they just do that "gold standard" biopsy.

I read somewhere (that I can't remember at the moment) about how much of each type of glutenous food to eat. If I find it I'll post it.

The other way to approach this is... Celiac is not JUST damage to the intestine. It's an autoimmune response, and intestinal damage is just a part of it.

A little bit of gluten can trigger an ai response without damaging a huge swath of the intestine (obviously, look how hard it is to find it on biopsy).

I am just regurgitating what has already been said, I think.

Hey, isn't a damaged thyroid enough proof?? I have one too, and if I would have known gluten did it I would have ditched gluten a long time ago. Because Hashis is a beotch to manage. Eating gluten-free is easy in comparison.

[beachbirdie]

I read that link today! Maybe you posted it somewhere else? Anyway, I got grossed out by the "fecal transplants" and my SIL is studying that in pharmacy school right now. Ok, I would have to be very, very sick to get an enima that puts in someone elses poop. I sit her perfectly healthy at the moment. But my husband said "If that cured DD of celiac, would you do it?" Well, absolutly! That's my kid...cure her anyway possible! (The blog was NOT saying it cured celiac by any means...my husband was just playing what if.) Apparently it is used in C-Diff.

I guess the car scratch made sense. I just got dinged really bad so I get it. Noticed it right away!

I understand that no symptoms do not equal no damage. I totally get that. I was just thinking that one piece of toast a day would be enough damage on a celiac to "see" on a biopsy. They don't test for inflamation other places...they just do that "gold standard" biopsy.

When I first heard about fecal transplants, I was kind of grossed out too. But then my daughter-in-law got a terrible C-Diff infection, and they could not get her over it. In fact, she was one of those who was made worse by the particular choice of antibiotic generally used. She had to go on the Vancomycin. We gave serious consideration to the transplant, but they were able to get the bacteria under control, and then she went on the Specific Carbohydrate diet. She is lots better, but I'm sure her gut flora is still messed up because of all the courses of antibiotics.

They do sterilize the poo and clean it up and put it in some kind of solution before they transplant it, and generally they try to get it from someone close to the patient! I'd definitely do it if it gave me back my intestinal health.

I'm thinking that one piece of toast might be sufficient for some people, it might not work for those who are less sensitive. On the other hand, though the mainstream sees the biopsy as the "Gold Standard", I think it is coming under increasing disfavor because it misses so many people.

[Aliciajoe]

DD and DS were just blood tested for it and it was negative. I have had skin issues all of my life and cc. DD is presenting the same way I did.. Not to mention the fact that Both sides of our family have celiac disease dxs. :{. I would likely have it done if it were to work.

[1974girl]

Hey, isn't a damaged thyroid enough proof?? I have one too, and if I would have known gluten did it I would have ditched gluten a long time ago. Because Hashis is a beotch to manage. Eating gluten-free is easy in comparison.

[pricklypear1971]

Hey, isn't a damaged thyroid enough proof?? I have one too, and if I would have known gluten did it I would have ditched gluten a long time ago. Because Hashis is a beotch to manage. Eating gluten-free is easy in comparison.

I was told that her thyroid happened first and it was because her dad is type 1 diabetic and they go hand in hand. Auto-immune diseases usually do. Every time I mention that she(age 7) doesn't have symptoms people here will say "isn't her thryoid enough". No, it really isn't. My husband is type 1 diabetic and he isn't celiac. Supposidly they go together, too. His endo says going gluten free will not help him at all. She was tested when they discovered the thyroid issue and was negative for celiacs at age 7...neg in every way. It did not present until age 11 and even then it was just a random blood test. She for sure had Hashimotos first. There are lots of people who have Hashis that do not have celiac...like her pediatrician. She has been Hashis for over 20 years until she finally had hers removed. She doesn't have celiac and told me that gluten will not affect my daughters thyroid. In fact, since going Gluten Free, my daughters antibodies have actually gone up on her thyroid.

Okay, so I'm so sorry I offended you...

In my case, the Celiac came first - unless I had un dx'ed Hashis younger than 5. And hey, guess what, I must not have because none of my thyroid tests ever came up positive in my 20's. And since the tests are always right it must be fact.

So won't bother you again. Go for it.

[Gemini]

I was told that her thyroid happened first and it was because her dad is type 1 diabetic and they go hand in hand. Auto-immune diseases usually do. Every time I mention that she(age 7) doesn't have symptoms people here will say "isn't her thryoid enough". No, it really isn't. My husband is type 1 diabetic and he isn't celiac. Supposidly they go together, too. His endo says going gluten free will not help him at all. She was tested when they discovered the thyroid issue and was negative for celiacs at age 7...neg in every way. It did not present until age 11 and even then it was just a random blood test. She for sure had Hashimotos first. There are lots of people who have Hashis that do not have celiac...like her pediatrician. She has been Hashis for over 20 years until she finally had hers removed. She doesn't have celiac and told me that gluten will not affect my daughters thyroid. In fact, since going Gluten Free, my daughters antibodies have actually gone up on her thyroid.

Maybe I can clarify things for you as what your doctors told you isn't completely true...and I readily admit I have little use for the AMA.

Think of Celiac as the Mother Ship of autoimmune diseases. It creates all this inflammation in your body over time and you don't know it yet. You have symptoms or maybe not but the damage is being done. It affects every single organ in your body if left undiagnosed long enough. So.....all this inflammation is going on and its not just your small intestine that is being attacked.

The immune system starts to look for other organs to attack as you have been blood tested and the doctors say you don't have it so you keep on eating gluten. The thyroid is one of the first places your immune system goes to for the secondary attack. I don't know why but it does. The pancreas is the next biggest attack site. This is why Hashi's and Type 1 diabetes are the 2 biggest diseases associated with Celiac. (Not quite what your doctor told you).

Your daughter did not just trigger for Celiac, it was most likely the other way around. The tests are notoriously incorrect in children because it takes a long time to register on blood work, with the testing that's available today. Her Hashi's most likely developed as a result of having undiagnosed Celiac. I would bet your husband has it also. How do I know all this? I was diagnosed with Hashi's at 32 and suffered with undiagnosed Celiac until I nearly died from it at 46. I also developed Sjogren's Syndrome and Reynaud's Syndrome along the way because the idiots in the white coats missed the Celiac in me for years. With the symptoms I had suffered with my entire life, I figure I triggered as a very young child. Lots and lots of damage.

Your daughters antibody levels for Hashi's may continue to go up until she heals her gut and even then it can take years for the antibodies to normalize for the thyroid. My thyroid antibody levels were 1200 a year before the Celiac diagnosis and it took me 6 years to get them back in the normal range and it wouldn't have happened if I hadn't gone gluten free. My brother has Type 1 diabetes and he is in denial and believes his doctors BS telling him he doesn't have it. He has lots of symptoms they blame on his diabetes. And you know what? My brother is dying from kidney disease and all the other diseases he keeps acquiring because he is still eating gluten. He won't live to see 60 years old.

You sound like you may be in a bit of denial about how far reaching Celiac is. That is normal because there is a lot to learn about this and its not easy to absorb all this information.

However, if you continue to believe what your doctors are telling you, your husband may end up a very sick man, very soon. Celiac is the root cause of many health issues today in many people and they keep getting the runaround from the medical profession. If you really want solid information that won't steer you in the wrong direction, stay with this board. Be very wary what the AMA tells you because they really don't get it yet. Anyone with Type 1 diabetes that has had a blood relative diagnosed with Celiac is probably looking at the same diagnosis. Your daughter got the gene from either you, your husband or both of you. I would strongly suggest gene testing for hubby and yourself to see where it came from.

As for your daughter's pediatrician.....she has Hashi's and it got so bad she had it removed surgically? She claims gluten will not affect your daughter's thyroid. You know what I have to say about that? Horse-pucky!

I do wish your family well but you are getting some very bad advice from your doctors. Show me a Celiac who doesn't!

[1974girl]

No one offended me. I don't mean for it to sound that way. I am just trying to put what the doctors are telling me and what people here are saying and sometimes they don't match. The endo tested her for celiacs at 7 and it was negative and they told me she was fine. I didn't change her diet. Maybe it makes me feel guilty that I didn't when you guys say that she did have celiac first. I had never even heard the term before and when the test came back negative, I thought we were home free. I do carry a lot of guilt around about everything!

My daughters GI doctor looked straight at my husband and said "Get tested immediatly." He has zero of the normal celiac issues but he got tested his Ttg was 3. (normal) Mine was 2. Not one single sign of celiac in our blood. But, we both carry the genes. He is DQ2 and DQ8 and I know I have at least one DQ2 because our other daughter is double DQ2. We know that at anytime, we could become celiac. And my daughter shares the "DQ2 and DQ8" which is linked to late onset type 1 diabetes. DH got it at 18. So we will always have to watch for that. I am hoping that gluten free will make that not show up! I feel like I am constantly waiting for the other shoe to drop.

[Lisa]

No one offended me. I don't mean for it to sound that way. I am just trying to put what the doctors are telling me and what people here are saying and sometimes they don't match. The endo tested her for celiacs at 7 and it was negative and they told me she was fine. I didn't change her diet. Maybe it makes me feel guilty that I didn't when you guys say that she did have celiac first. I had never even heard the term before and when the test came back negative, I thought we were home free. I do carry a lot of guilt around about everything!

My daughters GI doctor looked straight at my husband and said "Get tested immediatly." He has zero of the normal celiac issues but he got tested his Ttg was 3. (normal) Mine was 2. Not one single sign of celiac in our blood. But, we both carry the genes. He is DQ2 and DQ8 and I know I have at least one DQ2 because our other daughter is double DQ2. We know that at anytime, we could become celiac. And my daughter shares the "DQ2 and DQ8" which is linked to late onset type 1 diabetes. DH got it at 18. So we will always have to watch for that. I am hoping that gluten free will make that not show up! I feel like I am constantly waiting for the other shoe to drop.

In reference to you original post:

Open Original Shared Link

[1974girl]

In reference to you original post:

Open Original Shared Link

Thanks Lisa-very informative article.If they could detect damage after 50mg on the average person, then 4 slices of bread seems overkill. I guess they just want to make sure like the other person says. The support group leader told me that "I pumped my son full of it so the damage would be evident and we wouldn't have to keep doing this (biopsies)." I guess that makes sense. On a second point to that article...I hope they don't lower the standards now to below 20ppm. It seems like they'd just quit making gluten free food if they make regulations that tight. I had never thought of that.

[Lisa]

Thanks Lisa-very informative article.If they could detect damage after 50mg on the average person, then 4 slices of bread seems overkill. I guess they just want to make sure like the other person says. The support group leader told me that "I pumped my son full of it so the damage would be evident and we wouldn't have to keep doing this (biopsies)." I guess that makes sense. On a second point to that article...I hope they don't lower the standards now to below 20ppm. It seems like they'd just quit making gluten free food if they make regulations that tight. I had never thought of that.

Progress is good. As slow as it seems, I'm pleased.

[beachbirdie]

Oh, and my dd has hashimotos! She has had it for 4 years. They tested for celiac at that time and it was negative so I believe she had Hashi's first. I have heard (not sure if it is true) but that your second auto-immune disease will not be as strong sometimes. She stopped growing with Hashis for about a year before they figured it out. Maybe that is why she only has "simplification" at her biopsy. Technically, some doctors wouldn't even call it celiac because it was just blunting and not total villi destruction. Thankfully, our doctor took genes and blood into consideration. We got a 2nd opinion just in case and she also said consider it celiac. I wish all doctors were that way!

No one offended me. I don't mean for it to sound that way. I am just trying to put what the doctors are telling me and what people here are saying and sometimes they don't match. The endo tested her for celiacs at 7 and it was negative and they told me she was fine. I didn't change her diet. Maybe it makes me feel guilty that I didn't when you guys say that she did have celiac first. I had never even heard the term before and when the test came back negative, I thought we were home free. I do carry a lot of guilt around about everything!

My daughters GI doctor looked straight at my husband and said "Get tested immediatly." He has zero of the normal celiac issues but he got tested his Ttg was 3. (normal) Mine was 2. Not one single sign of celiac in our blood. But, we both carry the genes. He is DQ2 and DQ8 and I know I have at least one DQ2 because our other daughter is double DQ2. We know that at anytime, we could become celiac. And my daughter shares the "DQ2 and DQ8" which is linked to late onset type 1 diabetes. DH got it at 18. So we will always have to watch for that. I am hoping that gluten free will make that not show up! I feel like I am constantly waiting for the other shoe to drop.

Don't punish yourself! You have nothing to feel guilty for. You have been doing the best you could based on what so-called "experts" have told you. Most of us have been brought up to trust doctors, and it takes a lot of hard work to get to a point of understanding things for yourself. Thankfully you've found a great place (here!) to learn from the knowledge and experience of people who have been dealing with this for a long time.

I am glad your daughter's doc was able to allow your daughter a diagnosis before she got terribly ill. That is rare.

[ravenwoodglass]

My daughters GI doctor looked straight at my husband and said "Get tested immediatly." He has zero of the normal celiac issues but he got tested his Ttg was 3. (normal) Mine was 2. Not one single sign of celiac in our blood. But, we both carry the genes. He is DQ2 and DQ8 and I know I have at least one DQ2 because our other daughter is double DQ2. We know that at anytime, we could become celiac. And my daughter shares the "DQ2 and DQ8" which is linked to late onset type 1 diabetes. DH got it at 18. So we will always have to watch for that. I am hoping that gluten free will make that not show up! I feel like I am constantly waiting for the other shoe to drop.

If the only test they ran was the TtG then you should ask your GP to do a full panel.

[cindylou7]

What should I do next? I recently had blood work to check for celiac and the doctor said that the workup was all within "normal range" but there was something that could indicate a problem. Dx with nervous stomach in my teens, IBS in my twenties, constant anemia, leukopenia, chronic skin rash that was dx as shingles with regular outbreaks on face, in nasal cavity, and arm. Recently had a hysterectomy after chronic bloating and distention (mother died at my age from gynological cancers)they found cysts and endomyosis but no cancer. Endoscope and colonoscopy came back with GERD and peptic stomach, but there was no biopsy. I discovered the gluten connection on my own and I am trying to find help and an accurate diagnosis. My question is should I go to a dermatologist for a biopsy next or seek a professional with advanced knowledge of celiac disease. My last Dr said that since i respond to GFD I should just follow that, but what about family members. My father and one of my sons have digestive issues too.

[beachbirdie]

What should I do next? I recently had blood work to check for celiac and the doctor said that the workup was all within "normal range" but there was something that could indicate a problem. Dx with nervous stomach in my teens, IBS in my twenties, constant anemia, leukopenia, chronic skin rash that was dx as shingles with regular outbreaks on face, in nasal cavity, and arm. Recently had a hysterectomy after chronic bloating and distention (mother died at my age from gynological cancers)they found cysts and endomyosis but no cancer. Endoscope and colonoscopy came back with GERD and peptic stomach, but there was no biopsy. I discovered the gluten connection on my own and I am trying to find help and an accurate diagnosis. My question is should I go to a dermatologist for a biopsy next or seek a professional with advanced knowledge of celiac disease. My last Dr said that since i respond to GFD I should just follow that, but what about family members. My father and one of my sons have digestive issues too.

Hi Cindylou7. Welcome!

First, get copies of your blood results and see just what the doctor was looking at. If he saw "something" that could indicate a problem, you need to know what that is!

If you post your results here, in a new thread, more people can help you. They may not have done a full panel, they may be interpreting "marginal" results as "okay".

[MitziG]

The important reason to avoid cc, is because you want to "turn off" the immune response that is celiac. An active autoimmune response means your body thinks it is under seige, all the time.

Now, a teeny bit of gluten may or may not make you sick, but it WILL put the immune system on high alert again. Continual exposure to teeny bits of gluten means you never are able to turn that "alert system" off.

An active autoimmune disease is a dangerous thing.

Unfortunately for those testing, an active autoimmune response is not easily detected in blood. Its like looking for a speck of e coli in a bucket of water. Eating four slices of bread a day means the bucket will start to be flooded with "specks"- and then they are more likely to show up on a blood test.

So, while it is great to not be sick, the vomiting and diarrhea that some of us get from gluten exposure is not really the most important thing to avoid (though it certainly feels the most important!) The most important thing is stop the immune response that triggers it in the first place!

Hope this clears things up.