Michi8

Does anyone know why UNINVOLVED, apparently healthy skin should be biopsied? I know Peter Green is the reigning deity of celiac MD's, but he also says the gold standard of diagnosis is the intestinal biopsy, and I certainly don't agree with him there!

The reason was in the paragraph I quoted. Dr Green is not the only source of this information. Biopsy (skin & intestinal), for good or bad, is still considered to be the gold standard, and will be until other testing methods become standard. Personally, I put more faith in the word of a Dr who specializes in the study and treatment of celiac disease, than in a dermatologist who does not specialize in it.

Michelle

Of course, its babies to order... non of that inconveneice for the medical staff with the mother not making enough effort and deliberatly waiting till 2AM to have the baby just to spite them. With this they get the thing to order.

But they won't let the mother wait until 2am to have the baby! That's when they'll insist on an "emergency" cesarean (that you get prepped for an then wait forever to have.) Then there is the issue of cesarean section due to medical mismanagement of labour. There is a lack of informed consent when giving women epidurals too...many women do not realize that simply getting an epidural for labour increases their risk of ending up with a cesarean section.

I've got the experience of having medical mismanagement ending in cesarean section (x2.) Third time was a charm with having a homebirth VBAC. A wonderful experience supported by exceptional, experienced midwives. Wish all three of my births could have been like that. Best of all, recovery was a snap...unlike recovery from major abdominal surgery.

Michelle

How do you find a good dermatologist that knows how to do it right?

I'd ask here to see if anyone has recommendations of drs in your area. I can't give you my dermatologist's name, because he did the biopsy wrong (and got a negative result of course!)

Michelle

Good article, but old news. This information has been reported many times since I had my first (unnecessary) cesarean section in 1998...and the cesarean rate has been climbing since:

November 15, 2005

The CDC reports:

Cesarean rate for 2004 is 29.1%

The rate is up from 27.6% in 2003

U.S. cesareans have risen 40% since 1996

First-time cesareans are at an historical high of 20.6%

VBAC rate fell to 9.2%

Since 1996, the VBAC rate in the U.S. has plummeted 67%.

The cesarean seciton rate in North America is astronomically high, and women are being encouraged to choose a primary cesarean birth in absence of medical need. What many people fail to realize is that it is major surgery, with all the risks of surgery. Plus there are serious additional risks for the baby. Many women are not properly counselled on those risks...there is a serious issue with a lack of true informed consent.

There is a North America-based organization, ICAN (International Cesarean Awareness Network,) whose mandate is to lower the cesarean section rate through education, and to advocate for mothers in this regard. They also advocate VBAC (vaginal birth after cesarean) as a proven, safe choice over ERCS (elective repeat cesarean section). Unfortunately, the medical model of birth is based on fear...fewer and fewer practitioners are willing to properly support women in their desire for VBAC...and fewer and fewer practitioners are willing to support a woman through a safe, natural primary birth.

Check out ICAN here: Open Original Shared Link.

Michelle

I don't know if it's related to calcium. I have, however, read that psoriasis (an auto-immune condition) can affect the nails. There is information on the National Psoriasis Foundation website: Open Original Shared Link.

Michelle

My drmatologist said the biopsy has to be done on a blister that has not yet opened to get accurate results, otherwise the test will return non-conslusive or maybe as a false negative. I say get it ithere as soon as you can. Being pregnant doesn't matter. The biopsy is a simple slice of the effected area where the non bursted blister is. Good luck and best wishes. Kris

Is your dermatologist saying that the sample must be taken from the lesion or beside the lesion? If it is from the lesion, then he is incorrect... Peter H.R. Green, MD, Director of the Celiac Disease Center at Columbia University, wrote on the subject of skin biopsy for DH in his recent book.

From Celiac Disease: A Hidden Epidemic:

"The gold standard for diagnosis is a skin biopsy of uninvolved skin adjacent to an eruption -- best taken within millimeteres of a lesion. The biopsy must be done by a knowledgeable dermatologist because a sampling of tissue from the eruption itself can be confused with other skin conditions. A biopsy of the actual lesion will give a characteristic appearance, but it is not possible to do the immunological staining that is necessary to make the diagnosis. This is because the inflammatory reaction in the blistering lesion destroys the early signs of the immune deposits that are still present in adjacent tissue."

I believe not all (or many?) dermatologists are familiar enough with Celiac and DH to test properly, and some will even insist that the biopsy must be of the actual lesion. Perhaps that is standard when testing for other health issues, but as mentioned in the above quote, testing for DH in this manner gives inaccurate results.

Michelle

I have a daughter who is grown. If she acted up inappropriately in public I would warn her and ignore her entirely until she stopped, pretending she was not there. But she behaved well (didn't like to be ignored, I guess) and I don't remember something like causing a fuss in public happening more than a few times.

Since my daughter was always in visibly good health, it's hard to imagine what I would have done had she been chronically ill.

Just so you know where I'm coming from...

I've got three kids: 8, 6 and 4. They are generally well-behaved, and we usually get comments about how well they behave in many situations (in a restaurant for example.) I know their limits, and refrain from taking them places where I know we'll have problems (like taking all three of them grocery shopping by myself.) Sometimes public tantrums are hard to avoid, and I try to keep as calm through it as possible and get the child out of public as soon as I can. I have receive positive comments about my handling of those situations, which makes me feel a bit better, but it's still embarrassing to have a child act out where all can see. I would rather people just ignore what's going on.

Michelle

My husband has Celiac, his mother as well. We're trying to have a baby, and I have questons about my diet.

Should I go gluten free? Any one who has had a child with a partner with celiac who could give me some advice, I'd really appreciate it.

I don't see a reason for you to go gluten free if you aren't personally celiac. It will not affect whether the baby inherits the disease. OTOH, if you were eating a gluten free diet along with your husband already, there would be no reason to add gluten to your diet either.

It would be important, however, for a celiac mother to be gluten free during pregnancy as the ingestion of gluten would affect her body's ability to absorb the necessary nutrients for maintaining a health pregnancy.

Michelle

Well, if it were the case that I thought the mother was putting on a scene for the purpose of embarrassing the daughter (for doing something that nobody else actually noticed) I would hardly commiserate with her. I do not consider public humiliation to be an effective child-rearing technique. That's just bad behavior on the mother's part, on par with a 2 year old having a tantrum, or maybe worse, as we adults are supposed to be in control of our behavior. I might take it as a call for input - it was her choice to create a public scene where none existed. But generally speaking, I would be embarrassed for the child and simply ignore this display, as paying attention will perpetuate the issue.

I'm not condoning what the mother did, and I wouldn't be commisserating in that situation either. It sounds like it was an embarassing situation for that family, and it does sound like bad behaviour on the mother's part. Of course, we weren't there so we don't know how everything actually played out.

I'm curious, eKatherine, do you have children? Have your kids ever behaved inappropriately in public? How have you handled it? Would you have wanted attention from strangers in those situations?

Michelle

Michelle, I do hope that you find answers for yourself. And I will keep my fingers crossed that your drs. are much better than the ones that my mom has seen so far. My mom has 90% of the symptoms for Celiac and has for over 9 years now. She's had multiple blood panels, endoscopies, colonoscopies, etc.......they're all negative. But her sister did test positive and dd and I responded to the diet. My mom has slowed down on gluten quite a bit with positive results, but she still cannot resist her toast in the morning and her weekly fried chicken strip salad at Wendy's. lol!! What do you do? lol!! She's a big girl and can handle her discoveries at her own pace. As long as she keeps her gluten to herself, we'll love her anyways!

I hope I find the answers too...I've had symptoms for 20 years now. I will be going gluten-free regardless of the biopsy, just wish I didn't have to wait another three months for it!

Michelle

Interesting feedback...I agree it is a hard topic to bring up to strangers and I applaud GFBetsy.

From my own experience, my son was in SE preschool when he was four, one of the aides, who also worked as an EMT, pointed out to me on a Friday that my son seemed thirsty lately. I said, fine, just give him water to drink if he is thirsty.

A friend babysat him on Saturday night and talked about how thirsty he seemed when we met on Monday. Light finally dawns, we go to the hospital and it was diabetes.

When he went back to school, the aide told me she was concerned that it might be diabetes, but did not feel comfortable saying so to me. Ugh! And she saw me everyday when I dropped him off at school.

I would not want that to happen to anyone else. So, I may have jumped to conclusions, but I responded to the mother complaining loud enough for the whole room to hear about the daughter's crying, fussing and not eating at every meal, and she seemed to be at her wit's end; I did not hear or see the child during the meal time. Plus, she and her two daughters were very underweight. Not enough for a diagnosis, but those are clues. And, we all know how underdiagnosed celiac is, that public awareness is low, and even people/parents/family involved in diagnosis can remain in denial. And, many food intolerances are not yet recognized by the medical community.

I would have loved to have had the opportunity to strike up a conversation with the mother, but we were checking out that morning. Clearly, I did not feel comfortable chasing her down and bringing up the idea of food intolerances to her either, but I still feel I did a real disservice to the daughter, who was maybe 5,6?, as leaving some info at the desk was a shot in the dark.

I would fully expect a caregiver to report any issues going on with my child...they are an important ally in ensuring healthy emotional and physical development. They are in a good position to do this as they see your child for a good amount of time outside of your presence, and know enough about the child's typical behaviour to know if something's not right. It is too bad the aide didn't mention suspecting diabetes, as it would have given you a heads up for going to the doctor sooner.

The mother of the fussy girl, however, sounded like she was creating a bit of a scene. Perhaps she wanted all who may have witnessed her daughters' actions to know that she was embarrased about what happened in public. Being at one's wit's end isn't necessarily an immediate cry for help, but an outward expression of frustration. Personally, I find it more helpful to simply have others commisserate, rather than offer their opinion on how to solve the issue, or to tell me that I've handled something poorly. I especially appreciate the times when I'm told I've done a good job of keeping my cool in a stressful parenting situation.

Michelle

Michelle, I agree you can't tell others how to raise their kids even though you had a good experience with one method (I happen to agree with you). However, the difference is that celiac is on a lot of people's minds ... with the statistics that 1:4900 are diagnosed but 1:133 have it, the NIH is even taking it seriously now. I know it can be on your mind, like Nini said, but underdiagnosis is a very real problem. Anytime someone mentions IBS or some other disease that is commonly diagnosed instead of celiac, I bring it up. Of course, we're already talking about health. It would be nice if we had little pamphlets that said something about not taking offense, but the person who gave this to you thought you might benefit from knowing about this underdiagnosed disease ... I'm only half-joking.

But there is difference when someone brings up a health topic that naturally flows into mentioning celiac. It is an entirely appropriate venue in which to bring it up. Approaching someone out of the blue, however, may not be appropriate.

Celiac is on the minds of a lot of people in the celiac community, and I agree that the word needs to be spread. But it may not be appropriate to approach people on an individual basis, given that you don't know a strangers' health history. This is where there needs to be a strong community-based campaign to raise awareness and, more importantly, education in the medical community to make clear that old perceptions of the disease are just plain wrong and that screening for the disease should become top of mind.

Michelle

I forget what the term is, but when you are focused on something, ie: Celiac, you tend to see it everywhere in everyone... it's just that our awareness is keyed in on Celiac.

I do think we have an obligation to make people more aware of Celiac, but we have to be so careful to do it in a way as to not offend.

Michelle, I too would be mortified, but just keep in mind that everyone here has Celiac on the brain and that is usually the first thing we think of. And, we also know that Celiac is genetic and runs in families and doesn't always manifest in gastrointestinal distress. So even though you don't think it's Celiac, it is something to consider. My daugher was an extremely picky eater before dx, and now, she tries just about anything. Just a thought.

Thanks, nini. I do suspect celiac is in my family. But I'm going through the process of diagnosis carefully. I don't want to put my kids through unnecessary invasive tests (or be given the Munchausen by proxy label!) We're dealing with their current symptoms and trying different things. When I go through my own tests, then I may have enough info to proceed through further tests with the kids. I also suspect my husband may have it, but he is a tough one to convince (and he doesn't want to give up beer! LOL!). Given his scandinavian heritage and symptoms in his whole family I bet the tests would be positive. I also have to work around DH's skepticism with putting our family on a gluten-free diet...it is a delicate balance with working through the process. One step at a time though...like I said, I'm the pioneer here.

I can understand the focus for people who have celiac, and the need to get the message out. I was made aware of it myself with a campaign that was televised in the mid-nineties in BC. Then my boss, who didn't have any of the "classic" symptoms, was diagnosed. I'm not diagnosed myself (yet) but even I'm spreading the message to others about getting tested.

It's hard to know when the message is welcome and when it isn't. It's not unlike spreading the message about any other health topic. For example, I'm a big believer in extended breastfeeding, natural birth, homebirth and attachment parenting. I like to encourage other parents to follow that path. But I am careful to limit my enthusiastic support/promotion to those who are receptive. It's a touchy subject, and I don't know others' history/experience. And I would never go up to a total stranger and tell them how they should be feeding/raising their kids.

Michelle

Since I've been gluten free a year ago the blisters on my elbows have been perfect unless I go out to eat and don't question the food. I never had a biopsy but I might in the future. Anyway, I went to Friendly's to eat the other day and my elbows are raging and I have blisters all in my mouth. I didn't question what I ate because I am pregnant and was starving. I'm assuming that the sauces on my chicken had gluten. Should I go and have it biopsied while it's inflamed? Or maybe I should just wait until I'm done being prego. Either way i know gluten does this to me but it would be good to know if it was DH. How long after a breakout can you do a biopsy? I figure that by time I get an appointment to do it my elbows will be better.

I believe a biopsy can be done at any point (regardless if a lesion is active or not.) The key is that the tissue is taken from the normal skin beside the lesion, not the lesion itself.

In terms of biopsing during pregnancy, that is up to you. However, I believe you should be vigilant about staying 100% gluten free to ensure you have a healthy pregnancy and birth.

Michelle

Because chick peas are a legume they can make you gassy until your body gets used to them. I use Besan (chick pea) flour in my cooking and I found that my body took a little bit of time to become re-adjusted to the different flours etc. I was using.

It is worth persisting with different types of foods/flours/nuts/seeds. I look at my gluten intolerance as being a passport to a whole new world of foods out there that I would not have otherwise eaten.

That's true...provided you're not otherwise sensitive to legumes, your body does get used to them. I am a big fan of beans, chick peas, etc...great for fibre and protein...and have no trouble with related gassiness. Hummus is a big favourite.

Michelle

Since my Open Original Shared Link, I have gotten an appointment with the G.I. that did my colonoscopy. It's not till the 11th, so I'm trying to be patient and not change my diet, so as not to mess with the blood work...even though I really feel like I would feel much better if I just started eating gluten-free.

I get weekly allergy injections, so it occurred to me to get a list of the things that I'm allergic to today. Wheat was one of them! It wasn't the highest on my list, but it was close (2 points difference). Higher ones were corn, coconut, eggs, milk, and peanuts...but soy and yeast were also there.

To me, it makes total sense that the allergins that I tested for with allergies would also be giving me problems intestinally. Am I thinking right? Will showing the G.I. my allergy test results hold any weight? Could my problems JUST be food allergies and not Celiac Disease?

At one point, the Allergist (ENT) started me on food drops (not injections), but they seemed to be giving me intestinal issues (constipation, then diarrea)...which also makes sense, because the syrum is made up of the things you are allergic to--to build up a tolerance to them. My "inhalent" allergies are so bad, though, he wanted to get those under control, so we stopped the food drops and haven't started them back up.

What do you guys think?

Allergy and intolerance are two different things, but allergies can give you GI symptoms just the same. I've seen my allergies change over my lifetime. Food wise, I've since outgrown my peanut allergy, but have developed food allergies related to my severe Birch pollen allergy: all raw tree fruit, almonds & halzelnuts. From what I understand it's unusual to outgrow something like a peanut allergy, but to keep it out of your diet for a long period of time could help. Apparently, once you "outgrow" a food allergen, you need to keep ingesting it to remain free from allergy to that particular food.

Knowing that you are allergic to wheat should mean something to your G.I. I think it's reason enough to eliminate it from your diet regardless of your gluten intolerance/celiac status. Also, if you eliminate your food allergens from your diet, you may actually see some improvement with your inhaled allergies as well. Personally, I think it's hard on your body to continue to bombard it with allergens...giving it a break could be a good thing.

Michelle

As others have suggested, continued breastfeeding, if it will work as an option for you, is the best choice. All three of my kids nursed to around 2 years of age, but the one who benefitted the most (and went the longest - a few months past 2) was my son who had trouble accepting solid foods. And I was a big fan of being able to continue providing breastmilk when my kids were sick...provides all the nutrition & electrolytes needed in the most genlte format for the tummy. Wish I could have nursed them longer, but my body couldn't handle it (got an antsy feeling, kind of like restless leg syndrome) when I was a few months into the next pregnancy.

Michelle

It depends on the situation, of course, and would need to be brought up delicately, that's for sure. If someone approached me because I had a fussy, skinny child who refused to eat because it seemed to hurt, and said, "You know, I was like that as a child and I have this disease, I was just wondering if it's after any certain food that your child gets tummy aches. If it is, she may have what I do ..." That's not accusatory in any way and it would have saved me years of health problems if someone had said that to my mom.

Some parents are working on what the issue is, some parents are not. Mine did not do a thing to see what was wrong with me and would just tell people I was a baby and had a low-threshold of pain. Even when I was in my room with bad diarrhea (I had my own bathroom in my room ), they would basically ignore me as if I were making it up and would act like I was putting them out if I needed anything.

I would be more concerned that a child go till they're 43, like I did, than that I unitentionally hurt someone's feelings. Of course, no one's feelings should be hurt if the topic is brought up delicately like I mentioned. Unless someone is oversensitive, then it's their problem in my opinion.

True, but it might enlighten them to the idea that it's a food allergy causing the problem.

I don't think the subject should be brought up at all. I view it as any other parenting issue. I do not want it pointed out and questioned by strangers in public. If my kids were crying and creating a scene in public (for example, having a tantrum a the grocery store,) I just want to minimize it and remove them from the situation as quickly as possible. The last thing I would want is someone who doesn't know the whole story giving their opinion of how I should handle it. Same goes for opinions about health issues.

Michelle

I was not implying he does have aspergers only you and your doctors could tell about that. Aspergers by the way does not mean lower intelligence or functioning on an educational level, in fact it is usually the opposite. My DS is a honor student who just won a full scholarship to a very good school and is also very talented in art, science, philosopy, and mathmatics and mechanics. His Aspergers effected his social understanding.

I am sorry if you were offended, this is a message board with a lot of people at various stages of knowledge and understanding about celiac disease. It is natural for people to comment on the things other people state. The whole purpose of boards like this one is to learn from each other and that takes communication.

I hope you find answers soon to your problems.

I appreciate the knowledge that other have on this board...its the reason I came here while I'm sorting through my own health issues.

Aspergers has touched a number of families I know personally, and it was top of mind for me (along with OCD) when my son started showing his sensitivies. But he isn't exhibiting the social issues that coincide with the disorder, and that has been confirmed by doctors and our psychologist. In both mine and my husbands families we have many family members who have the same brilliance...some in math & arts, and some more in languages...and along with the brilliance comes certain personality traits that we're seeing in my son as well.

Michelle

This is just a suggestion but you may want to consider the possibility of celiac. This is the same sort of thing that I used to see in my DS, (who also has Aspergers at a very high functioning level) and to some lesser extent in his sister. His taste buds and senses of touch and feeling were on hyperdrive. We didn't think much of it because I am the same way. It wasn't until after he was diagnosed and went gluten-free that we realized all the things that were being impacted. He did have growth problems but his sister who is also celiac grew normally and had a good weight until her teens.

Sigh. Again, I didn't ask for help. Trust me, I'm as in tune with my kids as possible, without being neurotic about it. My son does not have Aspergers. We have been to a psychologist to work through some of his sensitivies (which are similar to my sensitivies, BTW) and to help him develop skills to deal with stuff out of his control (eg at school.) We deal with his food issues as gently as possible, balancing it with everyone else's food issues. My son is brilliant in art and math. We are contemplating doing an educational assessment when he is a bit older. He is inquisitive, observant and healthy.

I am looking into celiac for myself right now (negative panel, bone density test today, skin patch testing in two weeks, edoscopy in Nov, colonoscopy in March.) I will be looking into it with the kids after that, because all three kids have different health issues that could be realted to celiac: 1st son has chronic constipation (being treated, and had negative celiac panel BTW), 2nd son is thin, but has no other health signs other than hayfever, daughter has head to toe eczema, allergies, and the start of asthma. The diagnosis of celiac will have to come with time. No other extended family members are willing to test, so I am the pioneer here.

Michelle

Given the extent of undiagnosed celiac in the general public, I think it is highly unlikely that these people have considered it and legitimately ruled it out.

But I believe it is inappropriate to approach a stranger in that situation. Being a thin, fussy eater does not necessarily mean celiac.

Michelle

I'm sorry if you were offended, but you brought up the topic. I was unaware it was off-limits.

If you had read my original post thoroughly, you would have seen that I used my son's fussiness as an example to say that if someone had approached me to tell me what they thought about his fussing, I would have been moritified and angry. Nowhere in that post did I ask for help.

Michelle

Why does the child cry or whine? Do you pester him to eat things that bother him?

I'm sorry, what are you accusing me of? You think I "pester" my children into eating?

You've hit a real hot button here. I am extremely sensitive to my children's needs, have been since their birth. I work very hard to be in tune with their individual personalities and health issues. I, myself, have had multiple food allergies since childhood and so am very sensitive to their food reactions.

I am not looking for a diagnosis, and don't appreciate anyone sticking their nose in to examine what it "appears" I might be doing wrong. MYOB.

Michelle

If you are in the US then yes....

If you are elsewhere then it depends what it is made from.

I believe it applies to Canada as well.

I have one of those thin kids who cries or whines at (almost) every meal, and it's not because eating causes pain (he's old enough to tell us if something is painful or uncomfortable for him.) He is an extremely fussy eater, and we suspect that he's got a very sensitive palate, especially to bitter tastes (eg veggies) and mushy textures (eg mashed potatoes.) It goes along with his sensitivity to touch, smell, sound and sight. Unfortunately, his food fusiness sometimes becomes more pronounced when he's eating away from home, and has a limited selection of foods (like with a continental breakfast...BTDT.) My son could have celiac, but there is nothing about his growth and health that indicate it directly at this point in time.

It is an embarrassing situation for parents, and I would be absolutely mortified and angry if a stranger approached me to give me suggestions about what could be causing the crying. Personally, I would trust that the parents of the child are well aware of the issue, and could very well be looking into diagnosis with their doctor already.

Michelle

I was about a month premature, due to preeclampsia.

All three of my kids were "past due," a good weight, and had malpresentations (#1 breech - 8lbs 6oz, #2 asynclitic - 9lbs 8oz, #3 compound presentation - 9lbs 12oz.) They all have different builds & health issues too, and all are clearly allergic children. They were all breastfed for about 2 years each, and all spat up a lot (projectile) and had troubles with gas as babies.

Michelle

I've eaten them before, but am not a big fan. I find their meats to be kind of "fake" tasting, and have an odd texture. Of course, YMMV.

Michelle