Michi8

So it isn't anemia....Any other ideas I am desperate it is getting so much worse

Has your doctor ruled out lupus?

Michelle

Thanks, I'll have a bit less anxiety about it all now.

I'm curious, what were the results of the lactose test?

I've never had the lactose test done...would be a little worried about it, knowing how I do with lactose (probably would be running for a bathroom before they could do a blood draw!)

My Barium test involved no food or drink after a certain time the evening before. Right before the test I had to quickly injest a powder followed by water (the powder instantly fizzed while I swallowed.) Then I had to swallow the barium (they can add different flavours to it.) Didn't taste too bad. Then I was intructed to move into different positions on an xray table that moved from vertical to horizontal position...essentially the xray records the movement of the Barium through your system. Once the test was over I was instructed to drink lots of water throughout the day to help pass the barium out of my system.

Michelle

Congrats! Hope your symptoms are mild and start easing up before too long.

Michelle

My son has eczema, but it's always been on his feet and the back of his knees. He has a new rash on lower back. It looks to me lie it is a little different than the eczema, but similar. Does DH resemble eczema at all?

Thanks.

I'm not completely sure. My first outbreak of what might be DH was during my second pregnancy. My dr at that time thought it was strep infection (I didn't suspect DH or celiac at the time.) More recently, when I showed my dermatologist what I thought was DH, he didn't agree (but did a biopsy to humor me...took the sample from the lesion though, so of course the test came back negative.) The lesions in question looked quite different from my usual eczema, and scarred differently. My eczema typically shows up on my knees and elbows. My "DH" lesions showed up on my lower arms (below elbows), buttocks, hips, shins, calves and around my mouth.

You can do a Google image search to see pics of DH. Also check out this website for more photos: Open Original Shared Link

Michelle

I don't know about pre-packaged teriyaki sauce, but Google turns up all sorts of online recipes for making it yourself.

Michelle

Regarding curly hair.... i have struggled with mine for a long time and FINALLY found products i LOVE. so i'd recommend them to anyone with curly hair (celiac or not) and i have never seemed to have problems with them. they are: Catwalk by TIGI "Curls Rock" Shampoo and Conditioner. I also use the same line of stuff in this wierd pump cream stuff called "curl amplipher"....can't live without it. you can find them in most salons-moderatley priced-but not bad. its about $12 per thing (but they have deals all the time that make it cheaper or get one for free). I also use a little Dove mousse for curly hair. Hope this is helpful!

Also on this note...does anyone know if Benefit "the gloss" lipglosses are gluten free?

thanks! kms

I have used the Catwalk Oatmeal & Honey shampoo before, used to love it, but started to react to it...have since switched to Dove. I took a closer look at the Catwalk products today and checked out the Curls Rock Shampoo...It has wheat clearly listed in the ingredients. I didn't see the same in the Amplifier, but would want to ask the company for clarification. Given that two of their shampoos have suspect ingredients, I wouldn't be surprised that the whole line does. I haven't seen the same listed in my Bed Head products...I hope I don't have to give up my "Manipulator"...that stuff is the best!

Michelle

Would you be a little upset if you had a disease that was controllable by diet but doctors didn't tell you this, even though they knew, because they assumed you wouldn't be able to stick to it?

Well, that's what they do with diabetes.

Open Original Shared Link

They do it with DH as well. My dermatologist sincerely believes that Dapsone was the best answer to DH, and that the gluten-free diet was too much work to comply with. Not to mention he took the skin biopsy from the wrong spot. I'm afraid it's a very common problem.

Michelle

Hello There,

I am a newly diagnosed coeliac who has been looking for people who have been through a similar ordeal as I have.

I have been on the diet for almost a month now. I practically forced my doctor into testing me because I have had two 2nd trimester miscarriages in the past year with no known causes...until now that is. The first miscarriage was at 13 wks and the second at 16 wks. (Before this I carried two healthy babies who are now 3 & 5 yers old. Both pregnacies were pretty good overall, they were both big babies delivered at 39 and 38 wks).

My father is a coeliac which is why I thought my miscarriages may have been related to the disease. Well, I was right....my testing came back positive and my ob thinks the miscarriages were most certainly related. He has advised me to be strictly gluten free for at least 6 mths before conceiving again. I am soooo hopeful that by soing this I will eventually have another healthy baby as the loss of my 3rd & 4th babies has devestated me. After reading all of your messages here I am a little more hopeful of a good outcome. It certainly seems that by remaining gluten free the chances of carrying to term are a lot higher.

My advice to anyone who has not been fully diagnosed with the disease but has had successful pregnancies while not on the diet is to please have all the testing done before another pregnancy. A history of healthy babies does not mean it will continue. And finally a question...have any of you had a non gluten free then gluten free pregnancy to compare? If so, could you please let me know the outcome? Thanks so much.

Kelly

I am sorry to hear about your losses, Kelly. It's so good you were able to figure out it is related to celiac...it must feel good to know that you have diagnosed the problem, and can go on to experience better health and future successful pregnancies.

We have family friends (two sisters) who have experienced nothing but problems with pregnancies (infertility, failed IVF, mutliple miscarriages, serious health issues post pregnancy.) I really wish they would consider testing for celiac. Don't know if their doctors will ever make the connection though. Unfortunately, any time I suggest testing for it, everyone looks at me like I'm nuts.

Michelle

My cousins celiac was triggered by her pregnancy. She never had symptoms before that and after she had her baby she lost massive amounts of weight (without trying to lose the baby weight). She was pretty much instantly diagnosed. That is how I was diagnosed. When she found out and told the family and told us it was hereditary it instantly explained my years of stomach problems. Several tests later and here I am.

That's interesting to hear. I've had IBS-labelled symptoms & lactose intolerance for 20 years. I had some IBS problems during my first pregnancy. Post pregnancy, I lost all the pregnancy weight plus a ton of extra weight (I had been a bit overweight before pregnancy) in very little time (all 30 lbs of preg. weight gone by 4 months.) I had always attributed it to breastfeeding.

Second pregnancy I had what I think might have been DH just before the birth (very stressful pregnancy & birth since I was trying for a VBAC.) Post pregnancy I quickly lost even more weight (gained 40 lbs during pregnancy) all the way down to my teenage weight of 115 lbs. Again, I just thought it was from the breastfeeding.

Third pregnancy I gained a record amount (60 lbs), and then lost almost all of it in the first year (I didn't lose as much as before since I wasn't as physically active as before.) Once she weaned at 2yo, my symptoms really started to get wacky, and I'm still experiencing them 2 years later: anxiety, mood swings, hair loss, skin sensitivity, acne on face back chest and spreading further, changes/increases in allergies, numbness in toes & fingers, restless legs, painful fingers when going from cold to warm, sinus headaches, continued "IBS" and lactose intolerance issues, etc. And since weaning I've been gaining weight again...though I don't overeat!

I'm still waiting to do a biopsy in November...man I wish I could just get the test over with now and start the diet to see if it makes a difference!

Michelle

I am sensitive to all sorts of chemicals & products. Some cause breathing difficulty, some skin problems. I finally figured out that antibacterial products and cleansers are what was causing painful splits on the ends of my fingers, so now I use gloves when cleaning and will not buy antibacterial soaps. I'm having patch testing done next week to determine more specific triggers. My reactions have become worse over the years...celiac is suspected based on my many symptoms (will be having an endoscopy & biopsy in November,) it would be a relief to know if celiac is responsible for my ill health...maybe going gluten-free would finally make a difference.

Michelle

I'm not saying walking is bad, quite the inverse. I rather think as I said that 30 mins working a day should be done by everyone! (I actually said that somewhere in the post), I think I said as an absolute minimum to having an active retirement.

But if someone is looking to lose some weight there are more efficient ways (and these also have additional benefits) but not to the exclusion of walking 30 mins a day....

Square dancing is actually looking quite attractive too:D

But, is square dancing an efficient use of time...especially since you just keep dancing in circles (or is that squares?!) LOL! BTW, I'm a big proponent of dancing...before kids, it used to be my main method of exercise (that and swimming.)

In terms of walking...I'm not looking at it in terms of its efficiency (although a good walk is still way more efficient at burning calories than driving in heavy traffic!)...I'm suggesting not limiting the walking to 30 minutes a day, but choosing it as a mode of trasportation everyday...heck, you could walk your way to square dancing too.

It really should be a lifestyle choice...any other exercise done beyond that is a bonus. Making that lifestyle choice will help a lot with acheiving weight loss, and is much easy to keep up than to continue to sweat it out at the gym for a lifetime. Unfortunately, the reality is that few people nowadays live close enough to work or to schools & businesses to seriously walk everywhere they go.

Michelle

Since you enjoy cake making/decorating, have you ever considered offering "specialty" gluten-free cakes? There's got to be a market for it! Then you could keep doing what you love, without the risk.

Michelle

I don't really agree on walking, its a pretty inefficent way to loose weight if you are time limited. If you are not its excellent but you need to be spending a long time walking to burn off the same calories....

(snipped)

Open Original Shared Link

Walking in a park at moderate speed burns 130kCal/hr .. this sounds OK until you compare this to driving in heavy traffic at 120kCal/hr or

I respectfully disagree with this information. Walking is a fantastic way to better health (and has more benefits than just burning calories.) Almost everyone can do it, it's easier on your joints than running or jogging, and it costs no money. Simply choosing to walk instead of driving (everyday) can make a significant difference in overall health and acheiving ideal weight.

The "walking at moderate speed" example from the linked website is an example of walking leisurely (without purpose)...a good, brisk walk burns up more than 130 calories, and way more calories than driving a car. Here are some comparisons between walking, jogging and running from the same website you linked: Open Original Shared Link

Personally, I was way fitter when I walked everywhere during my day (lived in a pedestrian friendly city & neighbourhood.) Now that I live in a suburb where I must rely on driving, I really miss the time I spent walking and really miss the health benefits. I do not enjoy making time to go to the gym or swimming pool...it feels like a really inefficient use of my time...I'd much rather take a good walk to run errands.

Michelle

Yes, pregnancy can be a trigger. If you were celiac as a child, then you will be for life...it sounds like pregnancy brought the symptoms to the forefront again. Of course, breastfeeding is great for baby. Breastmilk helps protect baby's GI tract from developing disease, and encourages development of natural GI flora, and could delay the onset of problems for baby if they do end up inheriting celiac.

In terms of starting solids, definitely wait until at least 6 months. Nothing wrong with starting later either (some people start at 9 months or later)...breastmilk is the most important food for the whole 1st year...and it continues to have benefits to the older toddler, especially if they have a tendency toward allergy and disease. When you do start solids, start slowly. There is a really good resource here for feeding a food-sensitive/allergic baby: Open Original Shared Link and this is a good schedule of which foods to introduce when: Open Original Shared Link

Michelle

I'm due to give birth any day (hopefully soon, as I'm 8 days overdue!). Can anyone tell me what I should look out for in terms of any drugs or anything they might give me in the hospital during labor and delivery that might not be gluten free? I will tell all the nurses when I arrive that I have celiac and it's in my chart, but I wonder if anyone has any info. on common L&D meds that they know aren't gluten-free.

Thanks,

Anya

Best to check with the anesthesiologist(s) at the hospital. They would know what drugs they use, and what the components are. AFAIK, the drugs used for epidurals and spinals can vary (they use a combination of drugs.) Also ask about the composition of demerol, nitrous oxide, pitocin/oxytocin and cervical gels (used for induction.)

Michelle

I'm having an endoscopy to invesitgate what the problem is. Celiac is one suspected diagnosis. My blood work came back negative, so we've decided that further investigation is warranted based on my symptoms. After the test is done, I will be trying the diet regardless of the result. If it is positive, though, I would like to know for my own peace of mind, to know if it's worth testing my kids, and to encourage symptomatic family members to test as well.

Because I live in Canada, I have no risk of losing my health coverage and the test is not costing me out of pocket, but I do stand to gain a least a bit of help to finance the diet...and that tax write off is only allowed with a medical diagnosis of Celiac.

Besides, biopsies are far from the only way medical practioners make money off of patients. There are all sorts of unnecessary procedures, drugs, diets that make the medical establishment money. Personally, I think the high c-section rate (a good percentage of which are unnecessary) in North America is a bigger issue than the number of biopsies done to test for Celiac.

Michelle

I have the urge to constantly roll my ankles around (they usually pop a lot when I do this, too) and stretch my calf muscles. I'm always pointing my toes up toward my knees to stretch. Also, on the outside of the lower leg, I am constantly stretching/massaging this muscle also. It bothers me mostly at night or when I'm sitting down. It doesn't hurt, but is just uncomfortable. If you ever get the urge to "crack" your back or neck, this is how my legs feel, only they never seem to get that comfort of just being cracked, like your neck or back do after popping them...I hope that makes sense. I'm just wondering if this could be restless leg syndrome or something else? I have gotten a couple charlie horses in the calves(which I would say is pretty painful). This is different though, not painful like that...the only comfort I get is massaging all the muscles in my lower leg and rolling my ankles. My upper legs are never affected.

It could be. For me, when I'm having trouble with restless legs, they are just uncomfortable in any position that they rest in, so I have to keep them moving. Makes it impossible to relax and fall asleep.

Michelle

Thanks for your replies! It's a little comforting to know why this happened and that I was not the only one. Thinking back I do believe the amount of food I was eating did affect my milk supply. I am dissapointed in the doctors though. The hospital that my daughter was in is sapossed to be one of the best NICUs in the US. However, they knew there was a problem with my milk supply and had me talk to the lactation consultant who kept suggesting I was doing somthing wrong yet I was following what she and all the books said to do to increase milk supply yet niether the nurses or any of the many many doctors (teaching college) ever suggested taking a medication to increase my supply or figure out what the reason was. They just decided I wasn't doing what I was sapossed to and put my baby on doner breat milk. Talk about adding to the depression when you can't supply what you sick baby needs and the doctors say your lazy and not trying hard enough. I have thought about contacting them and telling them what I think of them and that they should help mothers with these problems rather than put them down but have thought against it.

I'm sorry to hear about your experience. Unfortunately, not all lactation consultants/doctors/nurses are created equal...and, quite frankly, I've heard some pretty bad breastfeeding advice from some of them. Unfortunately hospitals can be the worst places for breastfeeding friendly practices...seems there is always some practitioner who is trying to undermine your efforts.

There are foods & herbs that can increase your supply and there are foods that can drecrease it (sage for example). You can also buy herbal teas made specifically for breastfeeding. I used one by Gaia Garden Herbal Dispensary (Vancouver, BC) that was very good.

As well, I dont' know if the lacation consultant mentioned this to you, but pumping is nowhere near as efficient as a baby breastfeeding. I remember not being able to pump much of anything in the beginning, and I know some women are never able to pump much, but produce more than enough when baby is nursing. There are so many variables involved, and pumping is such an artificial method -- just a bit of stress can impede production. If you have so-called "experts" telling you you aren't doing it right it makes the situation even worse.

Michelle

My little guy has had nothing but organic since birth. I thought I was doing something good for him. I know that he's getting the healthiest choices, but even the organic baby foods have wheat and oat flour.

I'm certainly not opposed to making my own baby foods! I just wish this poor guy would get some teeth!!! =)

Making your own baby food is a great idea. Don' rule out slightly more solid foods though...even without teeth the gums are quite strong...he may be okay with whole, soft cooked carrots for example.

Since you're taking the introduction of foods slowly, are you also trying to avoid other potential food allergens/intolerances as well? I consulted an allergy nutritionist when my son was born and she went over the method of safely introducing foods to an allergic baby, and gave me a list of foods with their potential for allergic reaction...I found it very helpful in determining which foods to introduce first. I've also read that grains/cereals are a poor choice of first food, because of how hard they are on the digestive system. I didn't know that before starting my son on solids. We chose a plain rice cereal that had absolutely no additives...no iron, minerals, formula, etc...just plain brown rice.

Check out this Open Original Shared Link for more info (it's the same chart given to me by the nutritionist.) Plus here is a Open Original Shared Link of when it's best to introduce different foods to an allergic baby. Of course, with a baby who is potentially celiac, the introduction of gluten-containing foods would come last or not at all.

Michelle

I'm all for National Health! I think it's barbaric not to have it actually. Isn't the US basically the only first world country without it? Insane.

But that's a long wait! At least the endo comes first so you can find out about the Celiac & get started on the gluten-free diet sooner.

Leah

Yeah, it is a long wait. I do plan on trying the diet regardless of the diagnosis. Personally, I think my DH needs to be tested too, but I don't think that will be happening anytime soon.

Michelle

Yikes, I guess that's the price you pay for National Health... I had a 2 month wait & thought that was forever!

It's a price I'm more than happy to pay to have National Healthcare. No worrying about having to see a health plan approved doctor, no big out-of-pocket expenses, and no worry about being dropped from or refused insurance due to a diagnosed/pre-existing condition. The waits are basically for elective stuff...for those with emergency or life-threatening cases (eg cancer), there is no wait.

Michelle

Oh, man, I had mine both at once because to me the prep is way worse than the procedure! Plus that way there's only one anesthesia... you might want to consider rescheduling... up to you of course.

Leah

I'm afraid that is impossible, and entirely out of my hands. It's a three month wait for my endoscopy, and a 7 month wait for my colonoscopy. That's just the reality of elective procedures in Canada.

Michelle

A friend's husband has to have a endoscopy and colonoscopy tomorrow, She works for me and has asked off for tomorrow which is fine. But when she called to tell me she said she needed off tomorrow it was because he had to have major surgery and it was extremely serious. My first thougt was OMG. She said that she was going to call the family in and I asked what are they going to do. She said two scopes. I asked her what the surgery was and she said the scopes. She said surgery should last at least an hour and recovery about 2. Still confused I asked if he was having surgery after the scopes and she said "No, the scopes are the surgery. Scopes are classified as major surgery." I told her that she could have the time off and I prayed all went well. I have had 2 endoscopy, 2 colonoscopy, and numerous scans in the last few months but never considered them major surgery. Am I confused or has anyone else heard them called major sugery.

Hmmm, don't know if they're considered major surgery here...definitely an outpatient sugerical procedure though. Anytime there is anathesia in use, there are risks. For my upcoming endoscopy and colonoscopy (on different days...don't know if I could handle both in the same day!) I need someone to drive me to and from the appointment (because of the anesthesia.) If I do not have a support person/driver, they will not perform the procedure at all. IMO, taking the day off from work is justified...and my support person (DH) will have to take the day off too as the procedures are scheduled, but could be delayed to much later in the day due to emergency cases.

Michelle

Hi!

Everyone here has been so helpful!

I have a new question:

I got my blood test results late last week. Came back negative. However, the doctor still wants a biopsy done just to be sure. What is the likelihood of a biopsy being positive when the initial blood test was negative? I understand that this isn't really a "wash and wear" question. I had a gastroscopy years ago and do not recall it with any degree of fondness. Would hate to think I would have to go through that again if the chances were very, very slim of them getting any sort of confirmation.

Thanks in advance!

Karen in Sweden

Karen,

I'm in the same boat as you: negative blood tests, but still going for a biopsy. ASFAIK, it's not unsusual to have negative blood tests, especially if you're IGA deficient.

As I am in Canada, the biopsy will cost me nothing out-of-pocket, and there is a tax benefit for gluten-free foods only for those with a positive diagnosis of celiac. The biopsy is also important for me in that, if it is positive, then there is a reason to encourage symptomatic family members to get tested as well...including my children. I just wish I didn't have to wait more than three months for the biopsy (and more than 7 months for a colonoscopy!), because I would just like to get on with trying out the diet.

Michelle

So it goes like this:

Since January, I've been having Celiac symptoms, as I see it. Fatigue, bloating/awfulsmellingflatulence when I eat certain foods (not quite sure what, I think gluten), irritability, sleeplessness, depression, mysterious sinus headaches, and general dizziness. I've gotten tested this summer for sprue a couple times, and both have come out negative. I told my doctor, who is very experienced, that I didn't think the blood tests were very accurate based on what I've read, and he said that they are 99.9% effective, the ones that he'd seen done. Anyways, today I tested negatively for lactose intolerance as well, and I'd had a biopsy done earlier, which was part of a colonoscopy. They saw some enflamed tissue and I was (mis)diagnosed with Crohn's, but I really don't have a lot of Crohn's symptoms, I don't think. The biopsy was negative for sprue though too, I guess. Anyways, I'm not sure what to do at this point. I've cut gluten out of my diet, and it seems to be better, but then again, I've cut a lot of things out at this point (everything but meat, fruit, and veggies). I...don't know what to do at this point. Any ideas?

Nate

I don't believe that you can have a biopsy for celiac during a colonoscopy. The samples need to be taken from the small intestine...that would be during an endoscopy instead. Will you be having any other testing done?