MammaG

I really haven't been using any shampoos at all...and I'm really worried that the cause is genetics since my dad lost all his hair by like 22.

I'm hoping...maybe, just possibly that if I eat extremely healthy and and exercise everyday that I can go against nature and reverse it.

Don't worry about your dad's hairloss. The hair loss gene is sex-linked with your mother, not your father. So look to your mom and her siblings rather than your dad.

Anyway, if you want to wash your hair without using shampoo (I have been doing this for about 10 months now) there is a method where you mix baking soda with water and you wash your hair with that. Rinse well. Then as a conditioner you use apple cider vinegar with water and then rinse your hair with that. (Personally, I then do a third rinse with some kind of a "tea"- usually a nettle/sage tea). I know the site is a little odd but it explains the whole thing real well and how to do it : Open Original Shared Link I highly recommend it. Very cheap, effective, and gluten-free!

I really think that as long as you stay gluten free your body will be able to start feeding your hair from the inside out. It just takes super long because the "life span" of a hair is about 6 years. Depending on how badly damaged your intestines were/are it could take a really long time but I'd bet that by 10 months of being gluten free you should see signs of regrowth. Take care.

Hi

i want to know if any one out there can tell me about some fatty foods. I weigh 118 and I am losing weight because I have to eat healthy now. I dont really like ice cream. What kind of candy can I have? I love almond snickers. Just want to know what I can eat to gain weight.

I was 14 pound underweight (according to my Dr and the BMI chart). I went gluten free and the weight came easily on. I have gained 16 pounds in just over a year. But if you are in a hurry to gain weight . . .my kids were underweight too and the nutritionalist really suggested putting extra oil into everything! (she also suggested butter but that is because my kids are still really young- otherwise stick with the oils). Oil is high in calories and if it is healthy oil (high in mono and unsaturated fats) then all the better for the heart. Extra oil when cooking eggs, cream of rice, waffle batter, really anything you can think of. In fact oddly enough because my kids are so picky they would actually take oil by the spoonful. We take Cod Liver Oil everyday. My youngest also likes carrots dipped in mayo. We also have a coffee grinder that we use for flaxseed. So we add ground flaxseed to pancakes, waffles, any baking and to toast with almond butter on it. Avocados are also full of good fat. Guacamole or avocado slices rolled in deli turkey is good too. As you know seeds and nuts are full of good oil so a trail mix is good to have within reach for munching. I'm now just discovering sweet breads. You can often find recipies of these with oil instead of butter. I love cornbread! Yummy hunting.

So I've had "lady issues" since I was 12--first with violent, long-lasting painful periods that would last over 14 days, give me a few weeks off and then return with a vengeance. My doc put me on low dose birth control at 15 to control the symptoms and to get me to have more regular periods. I stayed on it until I was about 21 and then I went off of it to see if my body would self-regulate. My periods were normal for a while until I got into a car accident and had an ovarian cyst burst--then for the next several months, I had cysts burst on a regular basis, which is extremely painful. So my doc put me back on birth control to stop the cysts from forming.

I've been married for over a year now, and we'd really like to try to conceive soon (I'm 29). I feel healthier than I've ever felt--I've been vigilant with the diet. My blood levels and nutrient levels are all in great shape. I'm taking prenatal vitamins to prepare. And I've been off of birth control for almost 5 months. And I've read Toni Weschler's book and have been using FAM ever since. Unfortunately, I'm having really abnormal cycles. I know this is somewhat normal after coming off birth control, but I was wondering if any of you out there are charters who might know more about FAM than I do. And specifically if there are any things I should know or ways I should accommodate for having celiac and using FAM?

Oh one more thought real quick. Being underweight can also mess with you cycle too incase that might apply.

Also one thing I remembered from the book was that the abnormal part of one's cycle is the first part but then once you ovulate then it is pretty reliable that it is 2 weeks for your period to come. I also remember from other research is that it is actual a natural thing to have a fertile time of year (ever meet people with kids with close birthdays) and natural to skip periods too.

My first cycle was normal and lasted 36 days. But last cycle was 53 days, and I'm currently on day 50 of my next cycle. I keep having a situation where my fertility signs seem to align but then I don't get my period, I don't have 18 days of high temperatures, and I don't test positive for a pregnancy. In other words, on day 16 I'll have fertile fluid followed by a thermal shift, but my cervix won't be in the right position; then on day 28 I'll have fertile fluid, a thermal shift, and my cervix in the right position. But then 7 days later, my temp drops below coverline for several days followed by another period where it seems like I'm ovulating again.

My temperatures are low, and I wonder if this has anything to do with it. My average pre-ovulatory temp is 96.7 and my average temp after a thermal shift is about 97.5. Am I just being impatient--is this all just a side effect from coming off of years of birth control, or is it possible that these odd cycles are telling me something about my system, and are they at all related to celiac? For instance, could gluten exposure on day 28 stress me out enough to prevent my body from actually releasing the egg, so the clock resets and I ovulate later? I did have an accidental glutening this past weekend, and I don't know if that did anything?

So I've had "lady issues" since I was 12--first with violent, long-lasting painful periods that would last over 14 days, give me a few weeks off and then return with a vengeance. My doc put me on low dose birth control at 15 to control the symptoms and to get me to have more regular periods. I stayed on it until I was about 21 and then I went off of it to see if my body would self-regulate. My periods were normal for a while until I got into a car accident and had an ovarian cyst burst--then for the next several months, I had cysts burst on a regular basis, which is extremely painful. So my doc put me back on birth control to stop the cysts from forming.

I've been married for over a year now, and we'd really like to try to conceive soon (I'm 29). I feel healthier than I've ever felt--I've been vigilant with the diet. My blood levels and nutrient levels are all in great shape. I'm taking prenatal vitamins to prepare. And I've been off of birth control for almost 5 months. And I've read Toni Weschler's book and have been using FAM ever since. Unfortunately, I'm having really abnormal cycles. I know this is somewhat normal after coming off birth control, but I was wondering if any of you out there are charters who might know more about FAM than I do. And specifically if there are any things I should know or ways I should accommodate for having celiac and using FAM?

My first cycle was normal and lasted 36 days. But last cycle was 53 days, and I'm currently on day 50 of my next cycle. I keep having a situation where my fertility signs seem to align but then I don't get my period, I don't have 18 days of high temperatures, and I don't test positive for a pregnancy. In other words, on day 16 I'll have fertile fluid followed by a thermal shift, but my cervix won't be in the right position; then on day 28 I'll have fertile fluid, a thermal shift, and my cervix in the right position. But then 7 days later, my temp drops below coverline for several days followed by another period where it seems like I'm ovulating again.

My temperatures are low, and I wonder if this has anything to do with it. My average pre-ovulatory temp is 96.7 and my average temp after a thermal shift is about 97.5. Am I just being impatient--is this all just a side effect from coming off of years of birth control, or is it possible that these odd cycles are telling me something about my system, and are they at all related to celiac? For ins

Hello,

I recently heard that it matters which lab does your bloodwork when testing for Celiac. I guess some labs are "known" for false negatives. Does anyone know which labs are reliable; Which ones should I request bloodwork to be send to? Thanks

Ok so I am responding to my own post I just talked to a pharmasist and she said that yes all labs are supposed to handle and test everything; however some labs are more familiar with certain tests than others. She suggested to look at how many of the tests they do a year. ( so how do I find that out?) If it is a lab that only handles a few cases of the test than it would be a less reliable source of information. Her suggestion was to call Ellis Hospital or Albany Med (the two local big hospitals) and talk to their nutrition centers to see where they send their lab work.

And also I did some of my own research on the web and found out that one reason why labs vary with their results is because the EMA test is not standardized. Hmmm. . .

If anyone has any other input on these topics please post even if they are contradictory to what I have posted. I'm considering this as collecting info and not as a final statement so I am very open to more input. Thanks

Hello,

I recently heard that it matters which lab does your bloodwork when testing for Celiac. I guess some labs are "known" for false negatives. Does anyone know which labs are reliable; Which ones should I request bloodwork to be send to? Thanks

I'm only 19..and my facial skin looks terrible. My hairline is also starting to recede but thats another issue.

My peers have smooth, clear, glowing faces and it makes me sad.

Will my skin always be like this? I've been eating reall healthy,( for example broccoli, almonds, baked chicken breast, and sweet potato) since the diet (2 month ago), but I haven't noticed much of a change.

Once I went gluten-free for several months, I started growing more hair! I hadn't realized that my hairline was recedeing; However, an extra layer came in right along my hairline (mostly above my ears). My husband and I used to joke about how much I used to shed but now I shed at normal rate. Hair is softer too. I have been gluten free now for 14 months. So there is hope! Iron, fat and protein are all essential for healthy hair; once your body is able to absorb these your hair will show it. Good luck.

It really depends on your GI. A large number of GI doctors will diagnose you, recommend the nutritionist and then send you off to fend for yourself.

The thing is, the follow-up is almost as crucial as the diagnosis.

I went to my first Celiac support group meeting, in Napa, CA and there was an exceptional doctor who spoke and shared some key points.

1. You need to know which vitamins you are low in and take supplements in the right dosage.

- She covered all possible types of vitamin deficiencies and their symptoms.

2. You may need guidance in finding out if you have an accompanying problem - like a hypo or hyperthyrodism, microscopic colitis and so on.

3. Any other allergies.. Finding out what these are and treating them accordingly.

4. The possibility of leaky gut or candida.

5. Exercise! <--- I'm still working on that one

- A good exercise program is also crucial.. Motivation, even more crucial *lol*

If you'd like, I can provide her name and email. She was VERY informative. I'm looking forward to her opening up her new practice, so she can be my new follow-up doc!

I hope this kind of helps. Oh! And ask your GI and then any possible Nutritionist how familiar they are with follow-up with Celiac Disease. A good way to see if you have a good Nutritionist.. just ask them the following question, What gluten-free foods they would recommend, in order to retain the needed amounts of vitamins normally found in gluten containing foods? A good nutritionist should be able to not only provide a list of those foods, but know them right off the bat. If he/she hands you a bag of nuts and tells you to eat them for calorie intake - RUN!

Good luck =)

This is exactly the kind of information I am looking for. What deficiencies I need to check for and what other complications I need to be on the lookout for. If you or anyone else could point me in the direction of some specific resources I'd love it. Thank you.

Honestly you can learn more on here & other sites on your own than most dieticians can share with you .Some insurances will not pay for the dietician & it is not worth going. If the dietician has celiac or gluten intolerance then they can help. I've lost faith in most.

small intestine cancer does happen but it is still rare. It is best to not cheat & continue on a strict gluten-free journey.

Usually blood testing is done on a yearly basis to check to make sure where your level is..... not all doctors have this done.

hth mamaw

Yes we went to a dietitian once our son was diagnosed and she was not helpful. She said she had been gluten-free for 14 years so I thought she would be of great help. But some of the items that she told us were safe we have had reactions to. Between her and another aquaintence I have met it seems that the ones who have had been gluten-free for a while end up giving you old information. Things that are now considered gluten-free but weren't before (like vinegar) and particular products that used to be gluten-free but aren't now. I agree with the comment that this is really a good place to find out about up-to-date information on what is safe to eat. Ingredients can change or the source of natural flavors (a potential hidden source of gluten) has been switched within a companies products so if you have a question check here and check with the manufacturer. Good luck.

Wow! I am feel so blessed to have so many views and comments on my post. Here is an update:

Our next appointment with the GI in in two weeks. I called the GI and told him that I would like to have the blood tests, just to see what they say. He said, "So, I want to put your son through an unnecessary procedure? If the blood tests come back negative, I'll suggest the endoscope and if they are positive, I will still suggest the endoscope." OK, why would he still need to do the endoscope if the tests are positive?????

I was also asking him details about the endoscope procedure. I asked, "Will they give my son some gas to relax him before the sedation?" His reply was, "Would you gas him for the blood draw? The IV and a blood draw are basically the same thing." I also asked if I would be able to stay with my son until he is sedated. The GI said that is up to the anesthesiologist and can't guarantee that.

I then said that I am considering trying out the gluten free diet to see how my son's growth reacts to it. The GI said, "I can't suggest that at this time. It is such a lifestyle change. You should really see if he has Celiac disease first.

Something that I failed to mention in my original post:

My husband was also very small as a baby and continues to be below average in height. My mother-in-law kept very good growth records. My husband was 19 pounds at 18 months and 22 lbs at 2 years. I keep bringing this up to all the doctors. Although they seem listen, these facts seem to be unimportant. My son shows no sign of slowed/delayed development in any way. He is EXTREMELY active. Sometimes I wonder if he is just burning more calories than he takes in.

Whatever the case, I am not going to stop searching for an answer about his slow weight gain. I don't like the way that the GI talked to me, and I am going to call my son's PCP for a referral for a 2nd opinion.

I still welcome any suggestions and experiences.

I'm so glad you posted that about your husband's growth! It is so close to my daughter's. She was 18 lbs at a year and now at 27 months she just reached 22 pounds. We are waiting to do testing with her because we feel she is too young. But she has been gluten free for a year now since her brother and I are Celiac. I didn't want gluten to stand in the way of any possible growth- she needs everything working for her not against her.

As far as the Doctor goes. . .I am glad you are going for a second opinion. You need a doctor to work WITH you. But there are a lot of specialists out there who don't have good "bedside" manners. Good luck and Kudos to you for sticking with it and continuing your search.

No, this is not correct. To my definite knowledge, the biopsy is still the gold standard in at least Australia, New Zealand, the UK and Ireland. I'm pretty sure it's still the gold standard in other countries too, maybe others can confirm this?

To clarify: the Endomysial Antibody (EMA) test is a different test from the genetic test.

The EMA is a very accurate (almost 100 per cent specific) test for antibodies associated with celiac disease, so if it's positive you can be pretty sure it's celiac disease. The problem with it, as with all celiac disease panel blood tests, is that it can be inaccurate in young children. The EMA is less sensitive than the tTG (anti-tissue transglutaminase) test which also looks for antibodies. Genetic testing can be done and is accurate even in very young children, and can rule out, but not confirm a diagnosis of celiac disease.

This test cannot diagnose celiac disease, only gluten sensitivity.

I don't know, I just know that because of the EMA test coming back inconclusive- it gave the two doctors a point of disagreement with their assesment.

And as far as the poop test goes I felt it was good to have yet another indicator of course it can't be used on it's own as a diagnosis. - I like to collect clues.

As far as the countries: Ok so maybe we aren't the only ones - I guess memory didn't serve me right about that but I do know that plenty of other countries (Italy for one which claims that it tests everyone at the age of 5) only uses diet and blood tests to diagnose.

Anyway, like I said before collect your clues do research and choose according to your comfort.

Welcome!

A really good resource is the book "Taking Charge of Your Fertility" by Toni Wechsler. You can use it to figure out how long your cycle is, whether you're ovulating, if you're making enough "high quality fluid" for successful fertilization... or maybe you're fine and the problem is with your husband.

If you track your cycles for a few months and you're still not having success, then do schedule an appointment with a fertility specialist! Even though you're young, it can take a while to figure out what the problem is (if there is one) and go through treatment.

I second this book recommendation. It is a bit overwhelming at first but I am surprised at how well the ovulation observations work. For our second child we got pregnant the first time we "tried" we figured it would take a while. Good luck! Oh and have Fun

I didn't find out I was Celiac until my second child was born. Although there were signs which no one told me about like my first born was underweight - that is a sign that the mother is Celiac. Anyway, it took us over a year to get pregnant with our first. And now after having gone gluten free (after my second child) my periods are considered normal and heavy. During that year of trying doctors were wanting to call me infertile because I got my period only every other month and it was light too. I think had I been gluten free, the pregnancies and breastfeedings and subsequently the babies' sleeping routines would have been much easier! So if you suspect yourself at all then get tested.

Hey everyone, I am new on here. My name is Nicole, I'm 25 and I just was diagnosed with celiac just over a week ago(with a blood test and biopsy so confirm) So let me tell you the scoop on my background. My symptoms were, being tired all the time and joint aches, and going to the bathroom a lot(but not ever diarrhea...it was always a normal bowel I just went like 3-4 times a day sometimes) Also, I didnt lose a substantial amount of weight. Actually I was just married 3 months ago...and I had gained some weight in the summer and before the wedding lost about 5 lbs. So thats it. I started my gluten free diet and now have lots of energy! Will I gain a ton of weight? My doctor said since Im very normal for my height 5'3, 122lbs I probably wont because I didnt lose much. But is he right? I see a lot of people gain weight...are they eating bad? Ive always eaten well. I eat tons of fruits and veggies and lean meat. Of course Ill have chocolate sometimes too but overall my diet seems well-balanced. Thanks for listening!

If you are eating healthy then it is just a matter of how your body will deal with the diet change. What I mean is I was very underweight I needed to gain 14 pounds by BMI standards. I went gluten-free and slowly gained 11 pounds (over a year's time). I stayed there for a long time and just recently 5 pounds jumped on m3 from no where. I'm not complaining it was just surprising. The thing is my body was used to being starved (pre gluten-free). And so I think I and my body are in the habit of eating more and holding on to whatever it can. So if you continue to eat healthy your body will adjust. Don't hover over the scale if you notice an uninvited change than just adjust your portion size or your activity level. Don't panic. I expect to yo-yo between 5 - 10 pounds till my body realizes it no longer has to be in starvation mode- who know's how long I was gluten intolerant for? Take care and don't let chocolate become your enemy.

I was 33. Found it in my son first. While doing research I figured I had it. My blood test came back clear but I was still skeptical so I did the stool sample through Enterolab and asked for more tests to be done. The DEXA scan said that I had osteopenia. Given my family history of medical problems, my symptoms, the poop test and the DEXA scan I stopped there and went gluten free with my son. Life is better gluten-free.

Thank you for your reply! I look forward to seeing if being gluten free helps her hair! She has been gluten-free for 5 or so months. Also, we just started up the oils (I got her to take 1 coromega a day) so maybe this will help too!

s

Kudos to you! Keep up the good work.

Do the diet. There really isn't much else to say. You are Celiac she has the gene and is having symptoms- It would be hard to say she doesn't have it. If you really want something else to test then do the poop test like you did through enterolab. -I did it for me and my son. But I think you already know what you'll find out.

Hello,

My sweet angel has been having a heck of a time gaining weight since he was about 9 months old. Although he has gained weight, it has been very slow. He is 16 1/2 months and only weights 18lbs. He some blood tests at 1 year (nothing for celiac, unfortunately) and our ped thought maybe it was low growth hormone b/c of the tests. Since he was about 13 months old, we have been going to an endocrinologist, a nutritionist, and a pediatric GI. For the last 3 months or so, they all been advising me to try to get extra fat and calories into his diet. Although his height and head circumference are in the 10th percentile, his weight remains way below the chart. So, the GI suspects celiac disease. He wants to do a scope biopsy to test for it. I am just so against putting my baby through that at such a young age. Instead, I would like start a gluten free diet to see if he starts to gain weight. He has no other celiac symptoms other than slow weight gain.

If we start him on a gluten free diet, and he does indeed have celiac disease, how long will it take until we see changes in his weight?

Am I being a bad mom by not getting the scope done?

I would appreciate any input or experiences from any other parents.

You are absolutely not a bad mom. I have a lot to say about this but I'll try to be quick.

1- If memory serves me right the USA is the only country that has the biopsy as the golden standard to diagnose a person with Celiac. Other countries rely on diet changes and blood tests. The reason being that there are often false negatives. Yes the testing has improved over the years, but it still isn't the end-all. Instead of one biopsy they take anywhere from 5 to 8 samples during the one procedure. The problem is that that still won't catch the problem if that is not the area of the intestine that is affected. Intestines are something like 20 feet long and an endoscopy only goes to the top portion. Some people have the upper portion or the middle portion or the lower portion of the intestines destroyed. So the procedure is only for sure if it is positive for Celiac; if you get a negative you really still don't know. That is too invasive for not a sure thing for me or my child.

2- I had my son blood tested at 2 1/2 with inconclusive results: one specialist said he had it the other said he didn't. Bottom line, he was too young for the test. A person needs to be at least 3 for the EMA test to be useful. So all the blood test helps out with at that age is to find out if that person has the gene for it (which doesn't mean that they are gluten intolerant; just that they are able to develop the disease).

3- Other helpful tests: Test for anemia particularly when linked to B12 both need to be tested for this to be helpful again this only is helpful if you get a deficency result. And again just because this comes back clear doesn't mean anything but it is helpful if it shows a deficiency and at least all it requires is a blood draw. Another is a stool sample by entrolab (based in TX) - yes you send your poop via UPS to TX- it is the only lab in the country that does this. The downside is that this is not widely accepted because there hasn't been enough third party testing done. (You still have to be eating gluten for this one)

I just like to collect clues and see what shows up. The reason this is so hard to detect is because Celiac D looks different in each individual and because it is under diagnosed and under researched.

So what is one to do that will be convincing? Do some research, figure out what tests you are comfortable with and take the plunge and do the diet. It is a really tricky diet so give yourself two months on the diet before considering yourself on a gluten-free diet and then watch for changes in your child's health.

Some kids will go through a growth spurt after going gluten free but mine didn't. I think mainly because he has inherited all of our short genes. But other things cleared up. His anemia (linked to B12) disappeared, his BM's gained form, and his hair grew back. That is enough of a diagnoses for me (and for anyone who had changed his diapers prior). Plenty of people are Celiac and go gluten-free without a biopsy. Again choose what you are most comfortable with; just don't get forced into anything. Different doctors have different experience with celiac disease and understand it at different levels. Makes it confusing, but do research and trust your instincts you can figure this out. Good luck.

Thank you for all of your input. There are some good ideas in there that I hadn't thought of before. I particularly like the idea of them (both my kids) choosing one of each healthy food and then letting them have extra food that they want. I like the idea of putting the power in their hands and yet giving it structure and an added bonus of education (which foods count as which). And I haven't been good about making the food fun so I'll have to add that too. Thanks again and especially for the support offered. It has been stressful. Thank you, MammaG

Does anyone know if slow hair growth can be a sign of celiac? Along with that goes slow to lose teeth and of course slow body growth. I am noticing today that my dd's hair is hardly growing and her hair took forever to grow in as a baby/toddler. I have trimmed my 7 yr old's bangs 3 times and have not had to trim my 6 yr old's bangs at all. Plus she finally has 2 loose teeth. She's 6.5 yrs old. Her sister lost teeth at age 5. They both have gluten issues but the 6 yr old is the one with the major problems.

Thanks!

I don't know about the teeth. But hair is definately a sign. My son lost all of his hair at age 2 (almost 3) just as we were figuring out he had celiac. It was horrible. Anyway, going gluten free allowed for him to become nourished again and 14 months later he has lots of hair and a second layer is now growing in too. Going gluten-free I began to grow extra hair along my hairline. My husband and I used to joke about how much I used to shed and now I don't shed much (just the usual amount everyone does). Hair growth is effected by iron, fat and protien. Going gluten free allows for your body to get this from your food and lets your hair grow. Make sure she is gluten-free (it is a tricky diet) and my other suggestion would be to take Cod Liver Oil - it has good fats for your heart and is known to be good for brain, skin and hair. Good luck, Heather

We are gluten intolerant. My youngest (27 months) is underweight. How do I approach mealtimes? She often doesn't want to eat. My natural instinct is to say here is your food. If she doesn't eat it then fine she would have to skip a meal and eventually she would eat or make up the calories at another meal. However, being underweight I can't really let a meal go uneaten. How do I get her to eat without it being a control issue; I don't want to say eat or it is a time-out. Any suggestions?

A sad day indeed. I had a reaction, read this message board and called Hershey's. Though they wouldn't confess that anything has changed they did say that their natural flavorings are not gluten free. I asked if this was true for all of their products and they said yes. What is spring without Mini Eggs and Cream Eggs? I guess I just have to find another chocolate addiction.