lizzers

I was in the same position as you - but was feeling bad for more like 15 years, in the end I went and got some antidepressants/ antianxiety meds because being sick was really getting me down. You get to a point where you think that nothing will ever make you feel good again, and to where you are cutting back all of your food to where you eat nothing and still have gut - aches...

But with this I'd say - just keep trying and use whatever crutch in the interim to make you feel mentally better - because it might be a while for a diagnosis..

I've been getting pretty bad bilateral leg pain/weakness off and on for a long time. It seems to be worse in the morning, and is sometimes accompanied by tingling in my feet or hands. Is this something that is Celiac related? I've had my thyroid levels checked as many family members have Hashimotos , but i'm fine. I also had normal calcium, magnesium and b12 levels.......I do have a slight D deficiency.

Does anyone else get this? I've been gluten free for a couple months......will this go away?

I have this as well - i think it comes from a combination of too many carbohydrates (sugar/ etc) and a lower b12 even though your b12 came back "normal" you still may need more and/or an injection every once in a while. I've been told by my doc that I *don't need* b12, but when I stop for more than 6 weeks, I have more inflammation etc. The theory is when I'm gluten free for two years or so, I shouldn't need it by injection any more.. but until then I still get it.

The tingling can be diabetic neuropathy, b12 related, magnesium, zinc and/or related to high blood pressure, high levels of plaque/ cholesterol, inflammation generally or heavy metal deposits. So it could be a few things - if you go gluten free for 6 months and aren't noticing a difference, I'd get another opinion... but maybe in the meantime just focus on eating meat/veg/fruit diet and keep all the refined carbs until you know you are feeling better?

Could be a potassium deficiency too - like a charlie horse - in the uterus? Might also be a sign of something else - maybe you should follow-up with a gyne to make sure you don't have a cyst or something too....?

Tyleol is my only option. I am allergic to all the ones you mentioned. Maybe Pamprin may help. I will get on more calcium. Hopefully this will help me greatly. The menstrual massage sounds helpful too.

Sandsurfgirl -

First of all - big hugs from over here - and I think I can say that I know what you are going through.

I have been battling with this - getting diagnosed, getting deglutened, etc - for probably 15 years when I look back? Mood swings, etc.

I finally got to the point a while back and got some anti-anxiety/ depressants and decided that, you know, if I need to take these for the rest of my life because I have an emotional problem - or because of celiac or whatever, then that is fine. I decided I needed to feel better right now, I had had it with feeling off. Funny thing was, that about two weeks after that decision, and starting my meds, my diagnosis came in for celiac.

So, I would say, if you are down that much - maybe do talk to someone. For me, meds helped like you wouldn't believe.... and I also take vitamin D/ B/ magnesium and I self-administer B12.

I figure maybe at one point in the future I might be able to go off the mood drugs, but for now, they are my crutch. And they've gotten me to the point of being able to think ahead and plan. That is an amazing amazing step to be taking.

Whatever path you take - know you are on the right one and that whatever you do will lead to better health. And it will be so.. :-)

I'm feeling better physically. I do have a cold right now, and I'm fatigued. Waiting on thyroid and vitamin, iron levels etc. to see if one of those is the culprit.

But, I am struggling emotionally. I know it's a grieving process, but it's very hard at times. The sadness over all the stuff I've lost in life because of celiac is overwhelming at times.

The uncertainty of the future, not knowing how much healing I will get and if I will ever feel "normal" and healthy is overwhelming too.

I want to do this, that and the other, but when I make plans I just don't know what I'll feel like that day, so I can't count on anything.

There are always a lot of other vitamin deficiencies that go along with celiac - vitamin d, b vitamins, magnesium (lost in stress events), zinc, etc. If you drink a lot of water, and you feel it isn't going through your system, it could be you have a b6 deficiency too.

Bloating is a fun one though, isn't it? My mom and I both have celiac - she can gain 10lbs overnight literally - and then by morning it is gone. Me, I have a wonderful ring collection, but when I am 'bloating' my fingers can balloon up two or three ring sizes. I think it has been happening less often now, which is nice.

Another suggestion, kinda gross maybe, is to have a look at taking a de-bugging/worming mixture too - sometimes us folks with celiacs also have litte critters in our guts eating up all the delicious food that we aren't gaining the benefit from.... so getting rid of those little guys might help w/ the bloating/ digestion too.

I too am wondering when the healing is noticed; this is 8th week and today I am looking 4 - 5 months pregnant. I have been lactose intolerant always but just diagnosed end of 2009 with Celiac. I am so discipline, I eat about 6 different foods and the next week add something else. I did not do anything wrong and bamm...I am bloated. And the scale shows 8 pound weight gain...and that won't go away. So, needless to say, I wish there was the same pattern, do this for a week, 2 weeks or 2 months and you will feel better...I am still in the waiting to heal stage.

The only thing that worked for me was an elimination diet and writing down meticulously what I ate and how I felt. I wasn't super strict on this, but I found out that after I ate eggs, I would get really bad ezcema, and I would get tired - so I was talking with my mom, and she says "Oh, you were allergic to eggs as a kid - you didn't really eat them until you were five or six". So, I went off of them. Then I found out that I had horrid gut aches when I drank regular milk - so I stopped that.

I would first go with the foods that you think you should eat - or start with staples that you would rely on say if you were sick, or had a cold or something. Eat that for as long as you can, then start adding things in. It is a long process, but very very productive.

Allergy tests, I think, are bunk. I had allergy tests done - none picked up on the eggs, none picked up on my lactose issue (of course). But with gluten, eggs and milk out of my diet, I feel almost normal.

Well, as normal as I can feel :-)

Our story so far...

After 5 months of being gluten free and taking some Enterolab tests, I now know I'm non-celiac gluten intolerant. I'm a double DQ1, which research has found to be super sensitive to gluten, with a side of neurological problems. I've got a positive dx for peripheral neuropathy. Enterolab says I'm also sensitive to soy, casein, and yeast.

Been off gluten since October and eliminated soy, casein & yeast in Feb/March.

Although I am feeling better mostly, I'm still having ongoing issues. Some days I'll be just fine, really feeling fantastic, then other days I'll be wiped out, have all-day diarrhea and feel pretty much like something the cat dragged in. I know the neuropathy isn't going to resolve overnight, but on bad days it's noticeably more painful.

Since I'm careful to the point of paranoia about staying away from the 4 poisons I know about, I suspect other food intolerances are tweaking me. I'd really like to get a bunch of foods and additives tested all at once, rather than testing one food at a time. But who should I be working with? A neurologist who understands the neuropathy? A gastro who gets the GI issues? An allergist/immunologist who digs the chemistry? A naturopath who might take a more holistic approach? Up until now I've been going it on my own, doing my own research and ordering the tests directly.

I'd love to hear what y'all would think the best choice would be. If money were of no concern, I'd put together a dream team, one from each discipline. But since I don't have a diamond mine in the back yard, I have to choose.

Thoughts? Ideas?

My family has a bunch of weird diseases. My dad has the opposite problem - haemochromotosis - too much iron in the blood. When he gets his bloodwork done, he gets ferritin, total iron binding capacity (TIBC) and % saturation (I'm not sure if % saturation is a number worked out between ferritin and the TIBC, or if it is a separate test). The stupid thing is that you could have a low circulating iron count, and still have a high stored iron count, in which case you wouldn't want to be taking any iron at all as it could do more damage.

RBC count really has nothing to do with iron. Hemoglobin is a good one to get tested too - this is what they use if you would be donating blood to make sure you were fit for donation.

So, yup, I concur with all the rest - get a full iron panel - B12/folate, etc etc. (stick Vit D in there too). Then you can make a better estimation...

I have been gluten-free for 2 years now and have frequently experienced symptoms of iron deficiency, mostly shortness of breath and fatigue. My doctor only orders the RBC count (hemoglobin, hemocritin, platelet count, etc...) These levels all come back normal. Are these tests alone sufficient in ruling out iron deficiency? Is a ferritin or iron blood test different than the RBC count? Thank you!

From what I understand, gluten intolerance means that your body doesn't have the enzymes or whatnot for digesting - sort of like lactose intolerance- and that it isn't good for you to eat those foods. Celiac, on the other hand - is that when they can test for the specific igA in your blood to determine levels?

My situation is this - I'm overweight, have been for a while, probably PCOS. I grew up in a household where we ate no wheat, so a lot of my symptoms disappeared when I was 5, when my dad went on a wheat free diet. Before that I was thin, too thin, and had major problems with alternating diahrea etc.

So, I go to one doctor - I had tests for the antibodies done out of the country. Doctor one did a sigmoidscopy and a quick look in my esophagus (*ahem* not the right test *ahem*) and said I was fat and needed to lose weight. So, I was depressed for a bout three years, eating gluten, etc. Recently, I had a redo of the antibody test, from that they assessed that I was 90% likely to have celiac based on the bloodwork. The second opinion I got said that my intestine was sshowing some signs of damage, but not in line with a 34 year old (but she didn't know of my wheat free time, etc)... so she said, with the blood work/ my chronically low B12 and vitamin D levels, and the minimum amount of damage, she was happy to say I had celiac.

I think i was very lucky.

So, it would be up to you I think - either way, the gluten intolerance or celiac is life-long. For me i appreciated the diagnosis because now I *must* stay on gluten free diet - no more of this back and forth and wondering.

Ok, after going 5 months gluten free and having sucessful results, my doctor says I'm gluten intolerant. However, he doesn't want me to do the Celiac testing because he says I would have to eat gluten, and he told me he doesn't think I have Celiac because we would have found out before now. He told me I have IBS and that a food intolerance may be linked to that, and that my gluten intolerance should likely go away on its own it a few years. I asked him the symptoms of Celiac disease and he said, people with Celiac are short and skinny. I kind of looked at him weird because I am about 4' 11'' and weigh a whopping 100 pounds. So I figured I would just call myself gluten intolerant because I may not have Celiac disease, however, I think its entirely possible that I do. Here are my questions:

1.) Does gluten intolerance cause intestinal damage as well as Celiac disease?

2.) Do people with gluten intolerance have the same symptoms as Celiac disease, but just not the long term risk?

3.) Does gluten intolerance actually go away?

I want to understand this as much as possible.

I feel like my body has been healing since I stopped eating gluten: I am no longer constipated, my allergies are better, I have more energy, my anxiety is better, I don't have heartburn anymore, and well, I can eat again! I just want to make sure this matches with just having gluten intolerance.

Can anyone give me suggestions for good frozen pizza?

a gluten-free pizza crust ( a thin crust) is SO easy to make though - seriously

- 1/2 tsp instant dry yeast granules

About 1 cup warm water (105 - 115F)

1 tsp sugar

2/3 cup rice flour

1/3 cup potato starch flour

1 tbsp potato flour

1 1/2 tsp melted shortening

1 tsp salt

In a mixing bowl, dissolve the yeast in 1/2 cup of the warm water with sugar added. let set until yeast bubbles, and the quantity doubles.

Add the rest of the ingredients, using enough of the remaining water to get a dough the consistency of cake frosting that will spread not run, when all ingredients are thoroughly beaten. Grease a pan - could be a cookie sheet or a high-edged baking pan. Pour batter onto pan and spread with a spatula. Add sauce and toppings, bake in a preheated 425F oven for 25 to 30 minutes.

And done! And - it stands up - once it is cooked and the right consistency, you can pack it up, freeze it, etc and it reheats like a dream. and it is pretty cheap too - this will make about 1/2 a large cookie sheet of pizza.

What you need to do is pick out the person who seems to be most into bugging you about this, and, in front of a lot of people, stand up to him. Make him uncomfortable. And then let it go and pretend that everything is okay. But it will continue unless you stand up for yourself; if you go to HR and there is an "edict" about your eating habits, then they will still make fun of you, but just they will be a bit more sneaky about you.

You have bullies in your workplace. The best way to deal with a bully is to not take their b.s.

But I would say too, as someone with celiac, that having to deal with my own health issues has been difficult and I've also been the target of bullies at work - probably from my intermittent responses to things, my mood swings, etc. So you might be picking up on something else within your work place too - but honestly, just throw it back at them. I like the suggestion about the epi-pen. Or heck, say something like "actually, I don't have celiac, but I can't eat those things because I have <insert horrid disease> here, but I didn't want everyone to know about it".

Trouble is, I've embraced it and laughed with them in the past, and it's just escalated. In other words, I think it did pave the way to becoming a doormat. Turning the other cheek just egged them on somehow, maybe I'm just not a good enough actor. Anyway, I can't go on being a doormat, however I got here. But I do still appreciate the idea! I think that tactic may just work better for some than others? Maybe my experience of getting out from an abusive relationship in the past is why I find it so hard to just let nastiness slide anymore. Probably why it rattles me too!

I would recommend to use the gentlest soap possible on your hair - it might not be shampoo, maybe it is handsoap made w/ goat's milk and that's it -but thte goal is to clean the scalp off.. if you use a grater, add the soap to a cheese cloth & then rub that on your scalp it should help a bit. i ahve horrid large flakes on my scalp - the dermatitis they say - and supposedly it gets better the more gluten free you are. i've found that a medicated shampoo with salicylic acid works best for me - but my scalp isnt sensitive at all. also you could try olive oil to help loosen the flakes as well - then use soap to remove the oil.

I had lost a lot of hair before I went gluten-free, but I began to notice less daily shedding and, for the first time in YEARS, tiny new growth hair. I'm 10 mos gluten-free now and my hair is not only growing back in, and growing, but my receding hairline (and I'm female) is back to where it was when I was in high school.

The itchiness and flakiness has taken longer and some juggling of shampoo to figure out, but I think I finally have that under control too. I've known since high school that shampoos with sodium lauryl/laureth sulfate made me break out around my hairline, so I have to find a shampoo that has none of that (REALLY hard to find) AND has no wheat, barley, or oat as well. I do have a wheat allergy in addition to celiac, so you may want to look into whether you have additional allergies that may be playing into your scalp problems.

Sounds almost more to me like you might have other hidden areas of gluten, or you may be sensitive to another food as well (milk and lactose are big ones, eggs, etc). Maybe start up a food diary w/ symptoms to see if patterns develop?

RE Dogs - you should get all the wheat and corn out of their diet anyhow - that stuff will tear up their insides...

I just read a topic about wheat in dog food and it made me think about my situation. I have been on the diet for 2 months now and I have not been feeling any better. I have 2 dogs and one is an obsessive licker and I also kiss my dogs all the time. They sleep with me and are always by my side. If there dog food and treats contain gluten and they are licking me could that make me sick?

We are awaiting Promethius Celiac Plus test results but have been trying to be gluten-free and have gone from horrible gastric discomfort every day to 2-3 times in the last 3 weeks. We had a bottle of Ken's Bleu Cheese salad dressing in the house. Their statement (on their site and in their e-mail to me when I asked the question) says that this product does not contain gluten IN THE RECIPE. What I was hoping to hear was that this product does not contain gluten IN THE BOTTLE. I just thought it was a very odd way to put it and I have to question whether or not it is safe. My husband used it on his salad tonight figuring it was and had a bad reaction easily within a half hour of eating. We are very new to this and are still trying to figure out if gluten is the problem. Removal of it from the diet has enabled him to eat yogurt and have milk in cereal with no issues. Thanks!

Something to think about with blue cheese - here: Open Original Shared Link

I've just always stayed away from blue cheese - its easier that way.

What other things did you have to eat for dinner? Anything else that was processed? Any sauces, etc?

I've been gluten free a little over two weeks, but I keep having strange stress dreams where I am eating loaves of bread, muffins, etc. I've woken up in the middle of the night terrified before realizing I was dreaming. I am experiencing some anxiety over hidden glutens and cross-contamination during waking hours. Just wondering if this has ever happened to anyone else?

I have high levels of anxiety when I'm not on a gluten-free diet, but find it subsides with a few things - making sure my diet is truly free from gluten (I have to be really strict, no bad toothpastes, etc); I have to make sure my B12 is up at the right levels (I get a shot every 3 weeks or so) and I have to make sure I've got my Vitamin D too - for some reason Vit D really affects my ability to handle stress... Plus it could be that your anxiety is more related to celiac generally - maybe you might need to go on an anti-anxiety med or antidepressent for a while until your body fully recovers from celiac?

I would do some testing/ asking - ask your pharmacist (or a couple of them), go on and check on line. But also go to your doctor with your other symptoms... it could be something else entirely.

I am on a gluten-free diet. I have an allergy to eggs. I also have an intolerance to lactose. It is quite common for those of us with compromised immune systems to be sensitive to many foods. Sometimes on a gluten-free diet these sensitivities clear up, sometimes they don't.

At this point, I am self diagnosed. I feel a million times better without gluten in my diet and when I make a mistake...a pay for it. I know I am either Celiac or gluten intolerant. As all of us know in order for me to get more testing I would need to go back on a gluten diet...I don't think so!!!

So I am wondering...do any negative side effects exist for those of us who chose to Gluten-Free...who (although I DOUBT this is the case) do not have Celiac or gluten intollerance? The only down side I can see by not perusing this is possibly missing a correct diagnosis down the line.

Opinions please?!?!?!

Thanks all!

I think for me it was important to go back on the gluten-filled diet in order to get some sort of acknowledgment that what I was feeling was real. And it does impact a lot of other health issues as well - you could be anemic, have a low B12, have crappy teeth, etc that are a direct result to the diagnosis, and wouldn't be followed-up upon unless a doc knew you had gluten issues... but more importantly I think it is important to rule out other things as well - are you sure you don't have something more like crohns or colitis? for me I had a bunch of questions, and finally getting a doctor to answer them and have faith in me helps heaps.

And I've seen exactly what sandsurfgirl is talking about with me- because I'm overweight, not the stereotypical 'underweight' all along the way my self-diagnosis was questioned and questioned. it wasn't until i had a positive blood test, and then a funky biopsy that my docs started to believe that OMG someone can be FAT and have celiac.

Also, for Canadians, if you are diagnosed, you can claim the cost of your gluten-free foods on your medical deduction on your taxes, so that is a small benefit, but it is something.