Michi8

can we have ferrous gluconate?

Hanna

Yes, provided the format you take is gluten free.

Floravital (Floradix is the original version) is a liquid iron supplement that is gluten free. The iron is supposed to be more bioavailable than in pill form, and is less likely to cause constipation. I have been taking the pill format of Floradix, because there is no vitamin B12 in it (I'm allergic)...as far as I can tell, they have no gluten either (am waiting to hear back from the company to confirm this.)

Michelle

Thanks, Ursula. I was disappointed to hear the dr "wasted" one of my biopsies on my stomach...especially if everything looked normal there. Guess I just have to cross my fingers that the other biopsy shows something useful.

Enterolab is intriguing, but out of reach finacially at this point. If anything, it would probably be more helpful for my brothers and my father to get the celiac panel done...especially my brothers given they have very strong GI symptoms. My DH should as well, given his Scandinavian heritage and the GI symptoms he and his extended family have. However, they all are resistant.

I am getting set to officially start the diet on Monday. I've been invited to join my parents for lunch at Olive Garden tomorrow...it's my one last gluten-filled meal...haven't been there for a long time, and probably won't be going back anytime soon.

Michelle

Hi,

I have only just joined the forum, I dont really have any advice for you except to say that I am exactly in your position, I had my gastroscopy on Monday and found out on Friday that everything was normal and I (according to the results) dont have celiacs - I was absoloutely shattered, I cried and cried because I guess I really feel i have this and want a diagnosis for what I have - more so people dont think I am making it up, that i am tired and nauseous, etc - I know I am sick but it just feels like other people dont really believe me! Anyway, i came to grips with it and have decided to start the diet, started on Friday, dont feel any different yet but i know it is going to take time, I had to go to dinner last night for my friend's b'day(lots of people who didnt know me) and it was of all places, held at a pizza and pasta shop, I nearly caved - it was really hard, especially when you dont even know for sure it makes you sick - would be easier to comit to if i had a diagnosis, but ended up just having rice with chicken(only because i still have to reasearch what i can and cant eat - i know it is going to take some time before i feel confident eating out!) , got some very funny looks, and a couple of people thought i was one of those people who diets when they dont need to - had to explain the whole i think i have this disease but all my tests came back normal, just felt really uncomfortable. But anyway, I know I have to do this, I want to feel better and return to the person i used to be, I know it will be worth all the uneducated comments and looks if i finally start to feel better. I know its not really advice, like i said i am not in a position to give advice because i still dont know if i even have celiacs or gluten intolerance - just want you to know that i totally know how you feel and i felt better reading your story, knowing that there are other people with negative results and feel the same as me.

Hi PetaC,

I totally get the dilemma of starting and sticking with the diet with inconclusive results. Although, I'm beginning to think that there's likely a much higher rate of gluten intolerance in North America than is even now being reported...and going gluten free may just be more healthful anyway.

I'm worrying, too, about comments when I am eating differently than everyone else. I hate the feeling of divulging too much info...gives others the impression that it's okay to ask me personal questions and to pass judgement when it's not. I think I have to come up with a short and sweet answer to stop enquiries without getting into personal details (turn the tables and make those nosey people uncomfortable instead.)

Michelle

I highly recommend you read Celiac Disease: A Hidden Epidemic by Dr. Peter Green and Rory Jones:

https://www.celiac.com/catalog/product_info...products_id=477 It is very thorough and informative about Celiac Disease, the symptoms and health issues associated with it, testing, diet, etc. You should be able to find it at your local library.

Michelle

Are you sure it's not contact dermatitis? If you're reacting where your watch is, you may be allergic to something like nickel. Nickel in the diet of someone who is allergic/sensitive (such as in certain foods and multivitamins) could have ongoing reactions anywhere on the body as well.

Michelle

Rice cookers have a sensor and turn off when the water has boiled out. They don't necessarily cook rice quicker than a pot on a stove but because they turn off they are not supposed to scorch the rice.

I bought a mid-range Rival rice cooker and found it does great as long as you unplug it when it stops cooking. If you let it sit with the "keep warm" cycle, it is just as likely to scorch the rice as stove top.

I use the stove top for all of the brown rice varieties and only use the rice cooker for the white rice.

Bottom line for me is that both will work fine if you follow the directions and remove them from heat at the right time.

I am putting my vote in for the basic Sanyo rice cooker. It's cheap, but works really well. I have never had scorched rice from it...even when I use the keep warm feature. I've been using it for probably 14 years, and it's still going strong. It comes with an instruction booklet that recommends different amounts of water for different types of rice...also has a few recipes.

Michelle

Wouldn't that be great.

Just FYI...here is a link to proposed changes to the current labelling regulations:

Open Original Shared Link

Michelle

A quick Google search for "PTH Intact" brought up many links about tests for Parathyroid Hormone.

Michelle

In Canada, Lucerne does not have to list those types of ingredients. I don't think our laws are the same. But please somebody correct me if I am incorrect.

You're correct, the are no laws in place at this time...though they are in the works...and it sounds like they will be more inclusive than the U.S. laws.

Michelle

I'm afraid family wouldn't have much nice to say about going vegetarian...especially vegan...they roll their eyes at organic too. But, I've never seen them purposely undermine a diet...they just wouldn't think about it when making food for everyone. I'll never forget the time my BIL made dinner at the cabin...with peanuts!...I was still allergic at the time, and devastated that they were so insensitive (didn't help that I was only a few months postpartum at the time and an emotional basketcase!) But I know it was simply that, since he has no allergies, he simply didn't remember mine...but, after that incident, he doesn't forget now!

Thanks for the encouragement to go gluten free...now I've got to actually do it! Yikes!

Michelle

Thanks, Nancy. It's really nice to hear that others have BTDT. It would be nice to have a medical diagnosis to back up my dietary change, but, really, what's one more thing to make extended family think I'm off my rocker? I'm already considered the family hypochondriac who is over-the-top allergic to everything anyway.

I just got off the phone with DH too...he is 100% supportive of me going on the gluten free diet, and repeated to me that the testing can be inaccurate. He's also supportive of dietary changes with our son to get to the bottom of his GI issues. I feel a lot better having talked to him.

Michelle

Turkey pot pie. We make a couple of pies, and then also freeze some of the filling separately to make into pies later. Could also use it for a Turkey stew, chilli, shepherd's pie.

Michelle

Not much snow here, but right now it's -16c or -26c with the windchill. Monday's forecast high? -27c low of -31. I love it when our highs are -27c . Tuesday sunny high -18c low -30c. On the bright side, I do get to spend an hour at the arena tonight and a minimum 2 hours in a cold arena tomorrow, and another hour on Sunday as well. Sunday will be the killer. They changed the hockey practice, so each boy has a 7:15am practice and I'm working Saturday night so I won't get to bed until 1am then up at 6 for hockey. I must love my boys very much.

Where are you Chinook? Come out, come out wherever you are!

I love my boys very much too, but I'm happy they aren't interested in playing hockey! The schedule would be all consuming!

Michelle

who is very glad to have a new furnace this winter!

Is it possible that when she said she took two biopsies that she meant she took numerous samples from two locations? Several from stomach and several from duodenum? I'm sure you'll get a call in a week or so and if you are concerned call her office today.

No, she took two biopsies only. I'm sure it's because everything looked fine. I don't think calling her office will do much...she's got a horrible bedside manner (and so does her staff.) I was almost in tears over the dismissive way she talked to me on my initial visit. And, I doubt she would book another gastro just because I wanted more biopsies. Next encounter with her will be for my colonoscopy in March...which will probably be 100% normal too and a total waste of everyone's time. This dr's area of interest, BTW, is celiac.

When Ty had his, I believe they were all from the duodenum, but I don't know that for sure. I also don't know (or have forgotten) how many samples were taken. He was at the old Children's and it was all so overwhelming at the time that everything the doctor said went right out of my head immediately.

As for why you've been dealt this life of health issues - probably because you are strong enough to handle it. Right after Ty was diagnosed and he wasn't even six yet, we were all around the table eating supper and my older son was kind of complaining about never getting a Domino's pizza again and that's when I figured ut (and told everyone my theory) that Ty was the one with Celiac because he was the strongest of us all and he was just going about his business not complaining and just getting on with life while the rest of us tried to deal with the loss of just going out for the day and grabbing some junk at the food court, or not getting take-out pizza on pizza night.

I don't feel strong enough. I've had allergies since toddlerhood...it's always been one thing or another... And now my kids have health issues too. So I worry about them as well.

I hope you feel better soon and get some answers as well.

Thanks

Michelle

I had my gastroscopy yesterday, and it went well (though I have some stomach pain today.) I found out, however, that the dr only took two biopsies. One was from my stomach and one from my duodenum. I had talked to the nurses about how many biopsies the dr would take and I was told "a few." I didn't really have opportunity to talk to the dr ahead of time (she was booked with back to back procedures all day.) I am soooo disappointed that I waited 3.5 months to have this testing to only have two samples taken.

Everything apparently looked healthy, and the dr left notation that all was normal. I'm pretty sure that the two biopsies will come back normal too. So it leaves me back at square one again.

I had a biopsy done for DH about a year ago, but the dr took the sample from the wrong spot. So I have no confidence that the results were accurate. All my labs have come back normal, except for iron which has been on a steady decline. I started taking iron supplements, which seemed to have helped my energy a little bit, but hasn't helped at all with my hair loss, insomnia, moodiness, feeling cold, IBS, lactose intolerance, skin issues, libido, etc, etc.

Next labs will be done in January to test my iron levels and to do a thorough testing of thyroid again. In the meantime, I want to start the gluten-free diet to see if it makes me feel better.

I had really hoped that there would be some signs of intolerance though...as much for my kids as me. I wanted to know if there was reason to pursue further investigation of their health issues (1 son has chronic constipation, stomach upset and occassional incontinence, 2nd son is very thin and very sensitive, and daughter has chronic eczema and the beginnings of asthma.) My husband needs to be tested too (he's got multiple digestive symptoms, as does his family) but I know he will resist.

I am so frustrated and disappointed. I really feel let down by the medical system. I know this isn't all in my head. I just want concrete answers so I can start feeling normal. And I want someone to talk to about this...noone is home right now, and DH is too busy at work.

Michelle

bump

Thanks for reminding me about the holiday, I had forgotten...our Thanksgiving is a month earlier.

I'm feeling pretty low today. I'm really frustrated with my ongoing symptoms (a looong list) and the fact that every test I do comes back normal. This stuff isn't in my head (IBS symptoms, hair loss, skin issues, exhaustion, feeling cold, moody, etc, etc) and I'm so tired of dealing with this (IBS and other symptoms for 20 years.) I just want to get some answers.

Why have I been dealt a life of constant health issues? What is it like to be completely healthy and have no allergies or food issues?

Michelle

Anybody reading my posts?

Anyone have a normal looking system and still have a positive biopsy?

I'm feeling a little disappointed today that I spent 3.5 months waiting for this darned procedure to have her only take two biopsies. I didn't get an opportunity to talk to her directly before the procedure either...only to the nurses, who had assured me she would take a few samples.

My stomach is cramping a little bit today. I believe the dr took a sample from my stomach and one from my duodenum. Can positive results be found from either of those sites, or did the dr miss the mark? She is supposed to be well versed in celiac (it's her specialty)...I'm really surprised she only took those two samples. If the samples come back negative I'm still going to end up wondering if it's a false negative or not.

Michelle

The procedure went really smoothly. All I remember is having my throat sprayed, then having the "tooth guard" placed and having meds injected into my IV (demerol and something else?) I woke up 2 hours later after a really sound sleep. Apparently my body takes meds really well. It was a very surreal experience to wake up and remember nothing.

So the doctor wrote a note for me (she doesn't speak to patients after the surgery because of the amnesiac)...everything looks normal. I was disappointed to hear she only took two biopsies though. I expect the results of those will be 100% normal too. I think it will take more exploration and trying the diet to figure out what all my symptoms are about.

Michelle

Brrrrr! It's cold here, and getting colder!

The temperature will continue to drop through the weekend...the forecasted high for Sunday is -23C (-9.4F) and the low will be -27C (-16.6F). Yikes!

Michelle

I can't think of any scientific reason why staying away from a specific food would ultimately make you allergic to it unless you already were anyway.

There is certainly a lot that is uknown/misunderstood about allergies and intolerances...the medical community has a long way to go yet. However, not all allergies are related to the gut/digestive system, and many allergies are due to cross reactions (eg pollens and fruit). I certainly don't have to eat an apple to react to it...I can have a reaction by simply touching my eye after cutting one. I am allergic to it, because it is related to my birch tree allergy, not because I have digestive issues/leaky gut.

Allergies can and do change over the course of a lifetime. Peanut is one that was assumed to stay with you for life, but many people, like myself, have outgrown it...I believe it's more common than previously thought. My allergy to apples, BTW, started after my first pregnancy...about the same time I "outgrew" my peanut allergy.

Given that my allergies have been changing over the years, I do think it is possible that I may still develop new allergies...and I do believe it is scientifically possible to develop a wheat allergy at some point...but I do not already have an allergy (IgE response) to wheat...although I may have an intolerance to wheat/gluten (hopefully biopsy will give me some answers.) However, to take it out of my diet and reintroduce it just may be the trigger to developing an IgE allergic response.

Michelle

LOL

Probably too subtle for them. I'm breastfeeding, attachment parenting, babywearing....so they'd probably think it's just par for the course !

Yeesh. That's awful.

I got the granola label for all of those things (breastfeeding, attachment parenting, babywearing) plus sleeping with my baby...and when I had a home waterbirth, it was just over the top. Everyone talked about me and my "dangerous" choices behind my back, including my mother. I've also got the hypocondriac label, not to mention being the only one in the family willing to discuss anything of any substance.

Michelle

I remember I tried a gluten-free diet once and I got a bad headache until I ate bread - is this a sign that I am NOT celiac? I am pretty much a paranoid hypochondriac, so I always get worried about these types of things even though there is pretty much virtually nothing wrong with me.

The headache could have been a symptom of withdrawl. It can take a while for your body to get used to being gluten free, even if you are celiac or gluten intolerant.

Michelle

Yes, they are supposed to, but they often aren't.

I'm very sorry about your troubles. It's frustrating and as much as we sometimes want to beat them over the heads with a 2x4, we can't make people understand nor be sympathetic.

Ditto here. Family can sometimes be the most difficult to deal with! You can't choose your family, but you can choose to be amongst understanding and supportive friends.

Michelle

Interesting article. Thanks for posting the link. I wonder if it's only true for peanuts. I didn't know that people could outgrow an anaphylactic type peanut allergy. My nephew has almost died a couple of times by accidental exposure to peanuts - wonder if an allergy that serious could be outgrown.

My allergies are not now, and never have been anaphylactic. They are still IgE responses, but just aren't that that severe. I get itchy lips, tongue, throat and ears, skin reactions, conjunctivitis (from airborne allergens) and have asthma attacks (also from airborne allergens.) The dr calls my food allergies "oral allergy syndrome."

I do not know how often allergies that result in anaphylaxis are outgrown. One child that I know personally who has outgrown peanut allergy was assumed to be anaphylactic "just in case" (given an epipen in case a reaction became severe) but never actually had a reaction that severe. The allergy was determined to be outgrown with an oral challenge and skin test. He outgrew this allergy by the time he was 8yo...until that point, he carefully avoided all contact with peanuts and nuts.

Michelle

So basically this could go both ways?? Either I am making him more sensitive by keeping him off of it, or I could be causing unknown damage by having him on it. Am I right? I am a little confused. Basically what this boils down to for me is that I want my son to have the least complicated preschool experience that I can give him. I know how difficult it was to keep my dd gluten-free in preschool. I know it is not impossible, but why have your child left out of almost every little party if they don't have to be? (My dd is now starting to notice that her treat is different and she doesn't really like that.)

I guess there is probably no "right" answer to this question. I guess we will just have to wait and see.

Thanks to all who have offered advice and any more is always welcome!

Shannon

No, he has not been allergy tested. Do allergies run in families as well? We recently found out that my dd has a shellfish allergy. She also has allergic reactions to certain soaps. Maybe we need to check into that.

Thanks for the suggestion.

The tendency to be allergic can run in families, especially if both mother and father both have allergies. The allergies do vary from person to person, however. So, although your dd has a shellfish allergy, your son may never develop one. I developed allergies to different things than my brothers, and a different times in our lives. I was allergic to peanuts and cat dander since toddlerhood, where my brother developed an allergy to legumes, wheat (though it may be celiac...still trying to convince him to get tested!) and peanuts in his late teens. My allergy to birch pollen, tree fruit and tree nuts didn't show up until my early 30s.

Michelle

Hmmm, interesting. I was told by two different doctors that you tend to become sensitive (or allergic) to foods you eat the most. You've obviously had a different advice.

If your body is reacting to a food, it seems like you just shouldn't eat it. You can supress a reaction by continuing to eat small amounts of a food, but that can also burn your immune system out after a while. When your body reacts to a food or chemical it's telling you that it sees it as poison or at least as dangerous to your body.

For example - I am allergic to dairy, but consumed it for many years. My body could fight a reaction, and did so by producing small amounts of an opiate-like chemical, so I actually craved milk. (And, there was damage bing done to my body that I couldn't feel.) Once I stopped drinking it for a long time, my immune system no longer produced this chemical to fight the reaction and when I tried to drink it again I reacted very badly. This meant that I was giving my immune system a much needed break. I wish I could find the article that I read about this that explained it all. I know I'm not explaining it well.

I don't have time to respond in depth right now (I've been a mouse potato for too long today! LOL!) But wanted to pass on this article about outgrowing peanut allergy and keeping it at bay: Open Original Shared Link The reason I outgrew the allergy in the first place was due to totally avoiding peanut for many years . Had I eaten small amounts over that time, I probably would still be reacting to peanuts.

Michelle