Michi8

Is it the same issue with referring to your DH (dear/darned/damned husband) and DH (dermatitis herpetiformis)?

LOL!!!!!

I guess both could be a pain in the @$$! LOL!

Michelle

note: I had to censor "ass" myself, since the program apparently doesn't find it offensive!!!

I think it's crazy when you are reading about someone's girlfriend and they keep referring to their gluten free... or when someone is talking about the music on the compact disc in their car player and it comes out, I have the new Madonna celiac disease !!!!!!!!!!!

Is it the same issue with referring to your DH (dear/darned/damned husband) and DH (dermatitis herpetiformis)?

Michelle

Greetings, all!

I've lurked here for a couple of years, but need some help from the amazing collective expertise that's here.

I got the celiac antibody test from Optimum Health Resource (formerly York Labs), after a long delay (3 weeks from placing the order to getting the test; did not respond to 2 out of 3 phone calls, or my e-mail).

The test results are in question. You're supposed to get pink-to-red colored bands by the T's for a positive; the blue band is a test to be sure you've performed the test correctly. I'm not getting bands at all, but something pink is seeping from one end. (My best frame of reference is those OTC pregnancy test kits that have a control band, and another band that activiates if you're pregnant). But it's pink, all right.

Soooo...if any of you have experience with these kits, I'd really appreciate a reply. I've been keeping a gluten-free home for two years (family member intolerant), but that doesn't mean that I want to have to live a gluten-free life if it's not necessary!

I've tried to attatch a photo of the tests below, but don't know if it'll show up.

Thanks!

Tree

/Users/jimhayes/Desktop/DSCN1705.webp

Unfortunately, I can't help with the tests. You photo is not working though. Try using a host like Photobucket.com for your photo. You can then link it to your post.

Michelle

Lame Advertisement, poop, gluten-free, celiac disease

LOL!

I just found it curious, since I don't think this was happening when I first joined. There is one forum I'm a member of that simply links acronyms to a dictionary so if someone doesn't understand it, they can look it up. Hmmm...let's try a couple others to see if they change:

AFAIK

YMMV

ROTFLMAO

Michelle

Hmmm...guess it's not a very thorough censor!

Michelle

What is the problem with Tide and Bounce?

The chemical ingredients and scent can cause skin reactions: itchiness, hives, eczema...depends on what you are sensitive to (I am extremely sensitive to the ingredients in Sunlight: detergent and dishwashing liquid!) My skin and my daughter's skin improved quite a bit with changing detergents and elminated Bounce altogether. You really don't need a fabric softener at all, and static cling can be taken care of by using vinegar in the rinse cycle.

Michelle

I noticed when I posted last that "G F" (without the space) got changed to "gluten-free." Why is this happening now? Is there a reason that acronyms need to be changed? Is there a list somewhere that outlines which words/phrases will be changed?

Michelle

who's not thrilled about having words "censored."

Suzie,

I am new to all this celiac stuff and I had a question abut getting pregnant. I was wondering about how long would have to be eating gluten free foods before I can attempt to get pregnant? My sister and I both want a child and she is more celiac then I am but I was wondering also if I would have to eat all gluten free foods or what? My sister told me I would have to eat the gluten free foods for at least 6 months to a year. Was she right?

I am going to write down your recipe and try it.

Please give me a response on those questions.

Motherhen

You may find you'll get more response to your questions if you start a new thread about this topic.

What do you mean that your sister is "more celiac" than you. Have you tested positive for celiac? If you are positive then, yes, all your foods have to be gluten-free. I don't know if you need to be gluten free for any specific length of time before attempting a pregnancy. If you can get pregnant sooner than later then that's great...just make sure you continue to be completely gluten-free during and after your pregnancy.

Michelle

they look like what yours did...little red dots that are almost pimple like. i've never had any type of reaction like that to any type of new product...ever! So this is a little wierd to me. Is it celiac's related?

What do I look for on product labels? because it's not the same thing that i look for on food labels...is it?

It's not necessarily celiac related. You're probably reacting to something in the soap...and could be almost anything. Fragrances are often a source of irritation. I react to scented soaps, especially the deoderant ones. I tend to do best with Dove Sensitive, Dove unscented or a simple glycerine-based soap. Just another thought, though...was the water chemically softened? Bathing with softened water can be hard for those with sensitive skin as well. I find I have a terrible time staying at my inlaws because of their softened water (when showering). Also have trouble with their bedding since they used scented Tide and Bounce on their laundry.

Michelle

The allergy test you had would not test for lactose intolerance...it's a different reaction in the body. If it were just lactose intolerance, then yogurt would likely be okay for you as well as the cheddar cheese since the bacteria consume the lactose. I'm lactose intolerant myself and have no problems with yogurt or hard cheeses such as cheddar.

In terms of cheese/dairy allergy, I'd be surprised if you were allergic to dairy but not to cheddar cheese, especially since cheddar cheese produces histamine so can cause a reaction in absence of a true dairy allergy (cheddar cheese used to make my mouth itchy just like with my other oral allergies).

The IgG allergy testing is a bit controversial, and from what I have read, can produce false positives. From what I understand, the body produces IgG in response to exposure to foods/proteins but does not necessarily correlate with allergy. There all all sorts of conflicting info out there about various allergy testing methods...of course there are those that believe in it and those that say it's a bunch of bunk. Gotta take what works for you, and ignore the rest.

I'm beginning to think that the best way is to do a thorough elimination test on one's own, and carefully document any and all reactions: physical & emotional.

Michelle

Hey there,

I was only mildly allergic to hazelnut, nothing else. The doc said that could well be a false positive because the test is very sensitive and the wheal was small.

I'm sorry for your son! That sounds awful. I hope it goes better for your dd

It's possible you had a delayed reaction to an allergen. The scratch tests are only looking for immediate reactions in the specific area the allergen is applied...and are not 100% accurate. For someone like me, who has known, visible skin reactions, scratch testing is a good overall look at my multiple allergens. For someone who has more subtle reactions it may not be as helpful. Allergists can do a more specific test with injecting the allergen under the skin and looking for a reaction over a longer period. You an also do patch testing which tests over a 48 & 72 hour time frame. Finally, blood tests can be done as well.

I've just started reading an interesting book, "Is This Your Child?" by Dr. Doris Rapp. It's an older book, but it looks at children's immediate & delayed reactions and behaviours in determining whether allergies are the source of health issues. She considers emotional/behavioural reactions to be just as important as the typical histamine reaction in determining allergy, and suggests alternative methods for testing and treatment.

Michelle

I am wondering whats up with my cycle as well. I wish you good luck and good health and hope you figure out what is going on.

I have been gluten-free since May and off the pill since Aug. My periods are really far apart and I am taking vitimins. I don't think I am technically underweight but have lost a little, only because I don't eat as many cupcakes and cookies (I think that's why anyway). I have been feeling good, but the weird cycle is questionable, I'm thinking unless when I pee on stick tomorrow there's a plus sign, I should probably go to a doctor and ask what the deal is.

Have you ever considered trying FAM? (Check out the book "Taking Charge of Your Fertility" by Toni Weschler.) Charting your basal temp and other signs/symptoms during your cycle can give you information on what is going on, and provides your doctor with some detailed info for easier diagnosis & treatment.

Michelle

I used to keep a lot of snack-type foods around during pregnancy & breastfeeding. Home made trail mix, almonds, cereals. I, too, couldn't stand eating broccoli (though it is my favourite veggie!) and stuck to bland foods instead (potatoes, potatoes and more potatoes!) I also did okay with cauliflower...it's especially good cooked with carrots and onion, and did well with eating buckwheat kasha with bacon. Chocolate (just like coffee) is apparently not great for baby, so keeping it to a minimum can be a good thing. Oh...and I found ice cold water with lemon helps a lot with nausea and food aversions...ginger was another good nausea buster.

Michelle

Gluten does go through breast milk. Wheat/gluten is the only allergen that affects the baby if the mom is eating it.

There are other allergens that can affect baby through breastmilk. Peanut is one...it is recommended that, if there is a risk for peanut allergy, then the mother should avoid eating it during breastfeeding (peanut protein does get into breastmilk)...and probably during pregnancy as well. Milk in mom's diet can also affect baby, as can any gassy foods. If baby is experiencing spitting up and/or colic eliminating problem foods can help a lot.

Michelle

I have celiac, and my mother has celiac. Now, my wife is pregnant , and I pray that my child isn't.

I have heard from several sources that children of celiacs are supposed to be stictly gluten-free for the first 6 months of thier life, while thier immune system is forming, if they are at high risk for developing celiac (like my child will be due to genetics.) That's all fine and dandy, but here's where it gets tricky. My wife is NOT gluten-free. Will her breast milk carry gluten to the baby since she eats gluten? Does my wife need to be gluten-free while she breats feeds? I know this is kinda "out there". Just want my baby to have the best chance possible. Thanks!

Regardless of whether your wife is gluten free or not, breastfeeding is the best choice for baby, and will not change whether your child has inherited the genes. There is some evidence that breastfeeding is actually protective of baby's gut (encourages proper bacterial growth and provided much needed immunity) and may significantly delay the onset of active celiac disease. I don't know, however, whether your wife going gluten free (during pregnancy as well as breastfeeding) would even further delay the onset of celiac disease...something worth doing some further investigation.

Michelle

The Boston Pizza in Sherwood Park, AB (near Edmonton) has a sign up about no longer carrying gluten free pizza crusts once their current supply runs out. The manager said that offering a gluten free crust is not a chain-wide policy, and that for one restaurant to carry it has lead to an assumption by customers that all the restaurants do (apparently head office has received flack for it?!) Also, there is concern since so many staff members are new (there is a serious lack of service industry employees throughout this area) that CC is a bit of a problem. So he feels it's better to remove this item from their offerings. He did say, however, that if a customer brought in their own crust, they would still be willing to make them a gluten-free pizza.

Michelle

Can you buy products at the bakery?

Yes, they have a store...and I believe the prices are supposed to be better than at other grocers.

Michelle

Breast feeding is good for babies. Most illness's are less harmful while breastfeeding. You need to get in touch with La Leche League!!! They are your best hope for answeres. They have listings of harmfull medicins that will go through the breast milk. They have a list of doctors practiced in breastfeeding that can answer questions for you. Tell mummy to hush. Theyre was a time when the medical profession thought is was healthier to bottle feed. Before that they thought that breast feeding was better. Now they are back to breast feeding again. If you believe in God, why would you tell him that he didnt know what he was doing? Yet theyre are people who continue to do just that. God knew what he was doing when he made us to breast feed. If you dont believe in God well this is just what our bodies do. This is how they function. La Leche League can help alot.

You've had lots of good responses so far. I also recommend to continue to breastfeed. There are too many benefits for your child, and for you own body (eg reduced risk of breast cancer) not to. It's hard when well meaning family and friends try to pressure you with their opinions, but remember that a lot of their fear comes from general misinformation. Do get in contact with a lactation consultant and/or La Leche League for support!

Also, try contacting an organization like Open Original Shared Link. They can provide you with information to determine the safety of drugs during breastfeeding and pregnancy. This is a Canadian-based organziation (don't know the equivalent in the US), but you may find some useful info through their website.

Michelle

Michi8, your situation sounds so familar. My daughter has been on Miralax, an adult dose and a half, since shortly after stoping breastfeading at 14 months. She was tested for celiac at age 2.5 with a positive blood test and inconclusive biopsy. The Dr. at Children's Hospital told me it was not celiac at that time but simply childhool constipation and withholding. I had a newborn and accepted his diagnosis. Now two years later and having done a lot more research we had her retested with blood work and endoscopy. Again it was inconclusive but I know my child and I know this is NOT just constipation or withholding. We had her tested with Enderol Lab, a private lab that tests for Celiac Disease, and found out she did have Celiac as well as was Casein intolerant. Upon that diagnosis we have cut out all gluten and are attempting to cut out all casein. Her belly distension seems better but we are hesitent to start cutting back on her meds after only three weeks of the diet change. She is on Miralax and Fletchers Castoria and sometimes Mineral Oil. She is also very emotional, somtimes clingy. She has done amazingly well with the diet, especially for a four year old. I am going to have the blood test soon as well as my husband. We'll have my two year old tested if we see clear results from her diet change, which I hope we will. Good luck to you.

Thanks. It's so good to know that we're not the only family going through this. I knew my son wasn't witholding either...but he would just scream and struggle with each bowel movement too. He's not classic celiac, because he isn't thin and hasn't suffered with diarrhea...the abosolute opposite instead: he's a big boned boy with healthy weight gain and growth. But he also projectile vomited breastmilk for 6 months as a baby. We're going to try an elimation diet for sure...starting with milk first. I'll hold off on gluten free until after my biopsy results.

Michelle

That's interesting about the iron too. I was told they started running out of iron stores around 6 months.

Iron supplementation is a bigger issue for babies who are not breastfed. Breastmilk does not have tons of iron, but the iron it does have is very bioavailable, unlike iron fortification in foods or through supplements (which can be constipating/hard on the gut.) Babies who breastfeed past six months continue to get iron from mom. From what I understand, though, giving baby an iron supplement can interfere with absorption of the iron from breastmilk.

When I started solids with my eldest, I chose rice cereal. At that time, Healthy Times made a plain, unfortified, brown rice cereal that was perfect. A couple of years later, they bent to customer & industry pressure to fortify their cereals. I was not a happy mommy about that.

Michelle

You have given some excellent info here. I also have DH and know it can take a very long time for an outbreak to heal. Some of mine have taken up to 5 months.

I do want to ask if you can tell me why buckwheat is included in the foods to avoid list. It has been my understanding that buckwheat is actually a grass. I consume it all the time with no gluten reaction. Have I been glutening myself without knowing it?

Buckwheat is not a grain, and is on the safe list. You can keep on eating it!

However, it is on the "avoid" list for those who have dermatitis that is related to nickel allergy...in that case, it may need to be eliminated from the diet for awhile and then introduced once symptoms have disappeared.

Michelle

My naturopath Dr. Told me that Babies actually develop the enzymes to digest meats BEFORE grains. In fact, when I found out I had this gluten problem, I learned that the Chinese have a very low rate of it and they hold off feeding children Grains (including Rice) until about 2 years old. This gives the child's body an opportunity to develop properly to be able to digest. I think that avacado is a very good first food. Just smash it up. You can start at 4-6 months with that. It has the good fats for brain development. As with all people with food sensitivities, it would be a good idea to really rotate the foods. Give it once, then wait 7-10 days before trying another new food.

Also, Sweet potatoes are very high in vitamins and minerals and easy on the digestive system. Bananas, not too many because they can be mucous forming in excess. Home made green beans, squash, canteloupe. All of those are good. Peas are high in iron.

Interesting to hear about food introduction in China! I had no idea...I thought that congee (rice porridge) was a common first food.

In terms of introducing to foods to an allergic baby, avocado and cateloupe are fairly high on the allergen scale, and ideally should be introduced at a later age (avacado after 9 months, and cateloupe at 12 months or later, just as with watermelon.) Babies gets all the fat (and other important nutrients) they need from breastmilk or formula for the first year...introduced foods make up a small part of nutrition during that time.

Michelle

Her symptoms definitely sound like celiac to me.

Her permanent teeth have all come in much darker than her baby teeth for example. (a weird sypmtom I've seen associated with celiac)

It's possible for the discolouration to be from fluorosis. Is your tap water fluoridated?

Michelle

My daughter, 4 1/2, was diagnosed with Celiac and casein intolerance at the beginning of Sept. She has since been gluten free and casein light (to the best of my growing knowledge). Her presenting symptoms were a distended belly, severe constipation, and irritability, and being over-emotional (even for a four year old girl How soon should we expect to see results? When is it reasonable to start cutting back on her meds (a daily adult dose of Miralax for constipation, as well as Fletcher's at night)? Her GI specialist is of no help in this area. My husband is anxious to cut back on her meds to make sure the new diet is "working" but she has had a fear of passing painful BMs in the past that can feed into the psychological issue of it all as well. What have other's experiences been? Are we talking weeks or months to see results? Particularly with the distended belly.

How did you get the celiac diagnosis? What clued the dr in to testing for celiac?

My son (8 yo) is being treated with Miralax (polyethylene glycol) now for chronic constipation. He's had bowel issues pretty much since he stopped breastfeeding (at about 20 months) that really became a problem earlier this year when he was passing the largest, most solid stools imaginable after a great deal of painful effort. This chronic constipation caused him to wet and soil himself, because he could no longer feel the urge to go due to the distention in his bowel. The Miralax has helped a lot, but if he does not take it regularly, he's constipated again. And he has stomach pain quite frequently. He has come home three times since the start of school this fall...in fact, he's home again today.

We just saw the paed. on Wednesday, and she maintains that it's just slow motility and he'll struggle with it for the rest of his life. I'm frustrated, because I think there is something dietary causing it. Of course, when I mention I want to rule out celiac, drs always ask if any family members have been diagnosed. No one has, because no one has suspected it. I've got a long family history of GI problems, but none of them are "classic" celiac, so of course no one's thought to test! Familial symptoms range from reflux, suspected colitis/chron's, manic depression, multiple allergies, diabetes, cancers, lactose intolerance, IBS, etc.

I brought up my son's emotional symptoms as well: sensitivity (quick to cry), lethargy, irritability. So we're going to do a blood test for thyroid, and run a celiac panel again (my celiac panel came back neg. too.)

I'm still waiting for my own biopsy...and hope that I get some clear answers so that I have "reason" to suspect it with my son (and two other kids...who have different symptoms.) My husband needs to be tested as well...he's got way too many bowel issues that aren't as normal as he thinks they are.

Michelle

Thank you all for your encouragement and support.

Yesterday was a nightmare, I feel weak and tired to begin with but I went grocery shopping and by the time I got thru reading every single label on every product I bought I was exhausted and a wreck physically and emotionally and at times even wanted to cry...I know this pity party will be over some day but right now it is in full blown hats and horns party mode. I have never spent so much time in a grocery store in my life. My husband of 45 years is a doll, he is willing to help me cook, eat whatever I can eat and even re-reads the labels for me in case I missed something on the first reading, good thing I kept him all these years.

I am really having a problem with what to eat for breakfast...I don't want to find out that my cholesterol is sky high in a few months, so even though I love them, I can't eat eggs every morning as a easy, quick breakfast. I have never eaten grits in my life, just the thought of them is unpleasant, but I guess you have to do what you have to do...or maybe one of you angels out there will tell me what you eat for breakfast. Sissy

I wouldn't force yourself to eat things you don't like just because they are traditionally for breakfast. You can try thinking outside the box and have "lunch" for breakfast, but if you prefer "breakfasty" type foods there are still lots of choices:

yogurt, fruit and honey

eggs and homemade hashbrowns (eggs aren't as "bad" for you as once reported)

pancakes or muffins made with gluten free mixes

chicken & potato hash with poached eggs & salsa

fruit smoothies

etc

Michelle

Normal breastfed baby poops (for an infant that is 100% breastfed with no solid foods or formula having been introduced) are mustardy yellow. AFAIK, orange is not a normal colour and mucous is definitely a sign of problems. Sometimes, though, teething or illness can affect the colour & consistency of poops too (my eldest son, when teething, would have poops that looked like he had eaten cooked spinach...even though he was still 100% breastfed.) He also only pooped once a week from 4 months 'til about 10 months or so, but still his poops were soft, mustard coloured and non-offensive smelling (well, until he started solids at 6 months that is!)

Michelle