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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

gluten-free For...3 Days. Help!
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16 posts in this topic

I'm new. Diagnosed just Wednesday. On Thursday, I went through my pantry and gave away everything I couldn't eat. I figured, better to get it out of the house. I'm so ready to feel better.

My biggest question right now is, How do I know if I need to go lactose free as well?

I keep reading that it is best for a few weeks, possibly longer, and that some people don't need to do that. I'm confused.

A little background. I started having horrible diarrhea pretty soon after giving birth to my daughter. Initially I thought it was just my body getting back to normal from pregnancy, & L&D. It continued, so I assumed it was the extra hormones in my birth control. I tried 4-5 of those before my husband and I decided to conceive again. (14 months later, and 1 m/c, no new baby, which I blame my unknown Celiac diagnosis 100%) I experienced the diarrhea for another year before waking up one day and saying "This is enough!" It took my PCP 1 week to diagnosis me Celiac.

I'm sad, I'm angry. I'm in mourning. Did I mention angry? Life isn't fair. I'm struggling with this. I know it's only been a few days. I guess I just needed somewhere to vent for a minute. Thanks

Dana

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The reason they say to go dairy free for at least a few weeks is because the part of your intestine that the Celiac damages is the part that digests dairy. I didn't go dairy free. I don't drink milk. I just tried to eat small amounts - like 1 slice on a sandwich but not other dairy at that meal. That worked for me. Might work for you. Might not. You just have to try it and see.

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Hello & Welcome

First off may I ask how your PCP made a dx's in a week? Blood test? endo? That is not a usual happening, some wait years before getting a formal dx's.....

Yes, some people are dairy intolerant way before being gluten-free. And then some doctors suggest removing dairy to help with the healing process.

Casein the protein in dairy is also broken down at the tips of the villi as well as gluten...Many find after going gluten-free that other issues bother them ie: dairy, soy, & so on...but these are allergies to other foods......

It is good to gave away the gluten but is your whole family going to now be totally gluten-free ???? Or is your home going to be a mixed kitchen?

Also to be truly gluten-free you need to check all pots & pans, plastic, wooden, utensils that have scratches, toaster, colander, cutting board , all items like these mentioned.... (teflon coating) any scratched items are not safe to use for a gluten-free person...so they need to also be replaced.....

Gluten can be hidden in things like beer, malt products, soy sauce , toothpaste. marinades, rubs, coatings or breaded foods, griddle bastes to name a few......

When starting out start with things you know are naturally gluten-free.. Think naked meats, fish, chicken. veggies, fruits-------just plain items... you can spice things up yourself.... McCormick's clearly labels their spices....

And this is a good way to start out to help your body heal.. If possible it is good to avoid processed foods & restaurant dining for a few months to let your body feel better.. For some the process is fairly quick for others it can take years.....

once your body feels better you will know when a food disagrees with you. I call this process getting in tune with one's self....

Many go through the grieving process as one would do with the loss of a loved one.You may feel sadness, anger, denial, loss ,barganing with yourself & finally you will come to PEACE........

Being gluten-free is not & never will be convienent but it does through time get easy & better with a new found happy healthy new person...

Become a label reader-- its a must!

Another tip is to not let yourself feel hungry or feel deprived.... keep a stash of your favorite gluten-free goodies. almost anything wheat can be now found gluten-free......you may need to do mailorder as most of us do not live close to a gluten-free store that has a large selection....

Learn to be prepared have cupcakes, cookies, snacks available to you at a moments notice for when you get an invite!!! I alway carry a protein bar in my purse , have a bag of goodies in my car, snacks at work for when others bring in treats, I just get my gluten-free goodie out & share the time...

I have sauces frozen so if I need a meal to go to a friend's for supper....I always match my meal with what the hostess is serving...... I take breadsticks to a Italian restaurant in my purse ( warmed at home & wrapped in foil). a bun for a burger & so on...

The main thing is to be prepared always......

If you have favs & need to know the best sub in gluten-free just ask here & we can guide you to the best, that way you are not wasting $$$$$ buying & throwing out....

best of luck

mamaw

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Oh honey, I know. It is very sad- and angry-making at first. And no, life isn't fair. I never promised you a rose garden. But there are roses in there amongst those thorns, and one of them is another healthy baby. In the meantime, vent away.

Miscarriages are the body's way of telling you that it is not ready to make a perfect brand-new baby; that it needs some help first. So give it the help it needs and then try to conceive. Childbirth is often the trigger that sets celiac disease in motion; the other part is a genetic predisposition, just waiting for someone to pull that trigger. Now that you know you have it, you have to do whatever it takes to get your body healthy again so you can once again carry a healthy baby to term.

If you have a helpful PCP on board, hopefully she can do all the necessary blood testing of vitamins and minerals to find out where your deficiencies lie, because celiac is a disease of malabsorption and your body was telling you it didn't have the necessary nutrients to make a new baby. So get all your vitamins and minerals checked, especially D, B12, folate, iron/ferritin, calcium, magnesium, zinc and also have your thyroid tested (TSH, free T3, free T4, TPO antibodies, and there is one other I can't remember -- just TSH is not enough because you could like many celiacs have Hashimoto's thyroiditis). Once you have identified anything you are low in and have supplemented and brought your levels back up there is absolutely no reason you won't be able to carry a brand new baby to term. :)

In the meantime, your grief and anger are perfectly normal so don't apologize; just understand them for what they are and eventually you will be able to move past it.

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oops, another very important thing! No double dipping in jars......ie: jelly, peanut butter, margarine tub......

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Thank you all for your responses. I'm still new to the website, so I think the best way for me to respond is in one fell swoop.

My PCP seemed well versed in Celiac Disease. He mentioned it to me before running tests. Which makes me very happy in hindesight, considering from what I've read, most DRs are not very familiar with the disease. He took a large amount of blood, and a couple stool samples. I was in his office a lot. He said it was very evident, but like I said, it's only been a few days. I was instructed to go gluten-free, and he would be in touch. I'm not sure what happens next.

Since my dx, I have done so much research. I do cook a lot at home, so I am not really worried about adjusting that. It's just a big change for me. I'm having a hard time coping, but at the same time so very thankful for the dx. I AM sick, and I'm NOT crazy. ;) My husband and daughter will remain on Gluten, especially my little one. I will need her to be on Gluten to be tested in a few months.

Mushroom---thank you. Your post was so very sweet. You saw right through me! I desperately want to expand my family, but I know I need to get myself healthy again first. Although I feel responsible for my m/c, I know that in reality it was not my fault. I didn't know how sick I was. Thank you, thank you.

Dana

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Gluten withdrawl is fun is it not? :rolleyes:

I really don't have much to add. I cut dairy back some after my dx due to my throat (it was a raw mess). But i still ate cheese on occasion.

Keep it in your diet for now. If you find, further down the road, that you still are having some issues, then cut it.

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We are dealing with this same issue. My DD was Dx'd a week ago. The doctor said to use lactose free milk, but other's have said to go dairy free altogether. What is the difference?

OP: I am sorry about you miscarriage, but I am sure once you are healthy again everything will work out.

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(hugs)

Hang in there. Those first few weeks are tough. I felt very tired and grumpy for a while. It was like pms X10. It definitely is harder to mourn the loss of a previous way of eating and make that extra effort to eat in a new way when your body is making you feel bad. It will slowly get easier and your body will regain health.

Best wishes.

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Hi Dana. I am sorry for your troubles but encourage you to hang in there. I just joined this website today and am learning a lot.

I am ticked off with my GP (PCP to you Americans) as he seems quite willing to order tests if I am persistent enough over several visits re the same complaints but nothing ever seems to improve. I do have a complicated medical history, having had emergency open heart surgery 9 years ago when I was 52 (like my Dad before me and my Mom who also died of heart disease in her 60's). Since that horror show, now they say I have asthma, diabetes, GERD (maybe not, I am thinking if I have gluten intolerance but Nexium helped my GI stuff for a few years after the cardiac surgery), COPD (true) and hypothyroidism (also true and longterm). I feel as if my auto-immune system is taking my body apart one organ at a time...:(

So I am on a mess of meds and still feel lousier and lousier over the past year and a half. I have a longterm history of intermittent bloating, diarrhea, etc for nearly 40 years and it has been chalked up to IBS with which I am told I have to live. In the past year or more 'though, I have been getting almost no sleep because I am up and down with many many trips to the toilet with the most foul-smelling bms imaginable. My kidney function is way down (43 last month compared with 50 for several years previously), I passed a kidney stone in the spring, and technically my bloodwork puts me in the third level of chronic kidney disease but we do not speak of that; doc seems not to want to deal with it and blames it on my 'diabetes' that is not confirmed on A1C's but I am still kept on metformin for! Presciptions and tests seem more important to him than patient improvement...

I how have one last test, a colonoscopy, set up this week that I have been W/L for for three months so I am going through with it but in the past 7 weeks, I have seen three specialists (one for a new issue, "scalp psoriasis" that I never had before and now have to use a steroid shampoo for!), had a full cardiopulmonary workup and 9 tests ranging from minimally invasive to a MIBI scan to which I had a 6 week allergic reaction (we figure from the dyes used). Maybe what should have been ordered was an endoscopy but I am fed up so am not going back to any doctor anytime soon. I live in a small community in Canada and there are no options open to me for another doctor.

I have been having abnormal WBC and leukocytes in my blood and urine for almost two years, this time around, and my GP chalks it up to my being 'post menopausal'; that seems absurd to me.

Then, just over three weeks ago, I was out with a friend and she started describing her husband's struggles with celiac disease dx and diet. It sounded SOOOOO familiar to me. I was at the point I was not eating at all really, just drinking pop and milk (because I have to have something in my stomach for many of these meds). I had lost 5 pounds each of the last few months (but could afford to do that). I started to try to eat gluten-free the following weekend so I now have just over two weeks on the diet.

I already feel somewhat better. I sleep better and (TMI I know) can stand the smell in the washroom after I have been there. My appetite is improved. My gassiness out both ends is better too. I have my fingers crossed but am not seeking any more real medical input until I have accomplished a good trial myself with gluten free. My doc just pooh-poohs everything anyway.

Sorry, I know this post is way too long and am happy if it is moved/modified/abbreviated or whatever. I just wanted to welcome another newbie and tell you that you are fortunate despite your losses and troubles to be learning all this in your 20's or 30's instead of in your 60's like me. A proper diagnosis will enable a better quality of life I am sure. Good luck!

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I am so glad that you doctor picked up on this! I am so glad that now you know how to solve your health problems. I hate to see anyone go through withdrawl, but it is good to know that sometimes when you feel the worst that the best day is coming soon. That has been how it is for me.

Keep on looking for answers and the keys that help your problems. It can be complicated, give yourself time. Most of all, Get Better Soon and here is some flowers to help you through.

*****

!!!!!!

Diana

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We are dealing with this same issue. My DD was Dx'd a week ago. The doctor said to use lactose free milk, but other's have said to go dairy free altogether. What is the difference?

OP: I am sorry about you miscarriage, but I am sure once you are healthy again everything will work out.

The difference in this case is that you had already removed most milk and seemed to be headed down that path. With the symptoms you described, milk seemed to be an obvious culprit. In this case, it is a question of should milk be removed for no apparent reason whatsoever. The answer to that is generally no. Some people feel better. Some don't. I tried to remove milk but it is something I am simply not willing to do without.

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Thank you all so much for your responses. I am so happy to know I'm not as alone as I feel. I might freak out on the next person who says "oh well! Its healthier anyway." --coming from people who are ignorant to Celiac/gluten-free and just assume I'm cutting out bread. I want to hug the people who say "Don't worry, you will feel so much better soon!"

Btw, I'm on day 7 now. I haven't had any stomach cramps/diarrhea since! I am very tired though, but from what I hear I will be energetic soon enough.

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Thank you all so much for your responses. I am so happy to know I'm not as alone as I feel. I might freak out on the next person who says "oh well! Its healthier anyway." --coming from people who are ignorant to Celiac/gluten-free and just assume I'm cutting out bread. I want to hug the people who say "Don't worry, you will feel so much better soon!"

Btw, I'm on day 7 now. I haven't had any stomach cramps/diarrhea since! I am very tired though, but from what I hear I will be energetic soon enough.

Yay!

It is hard what other people say. No doubt.

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I was so dairy-reactive 10 years ago, I remember being annoyed at all this stuff on the Specific Carbohydrate Diet boards with the recipes using yogurt, and yogurt, and more yogurt :rolleyes: and saying how wonderful the probiotics were in it. This is when I discovered one could bake grainless without it, by using almonds and eggs, if one didn't obsess over the end result having a 9x5" loaf shape of "bread." It took a while to get back to adding some dairy in my diet, and at first it was in the form of a little cheese, (cautiously...) because I couldn't find a yogurt that worked for me. Now I just have to be careful with what brand yogurt I use, avoid the additives, and not over- do it. I knew I had a dairy problem, in the form of couldn't handle lactose and then it became all of it, the exasperating part was that I had had the dairy problem since the late 1980's. :ph34r: If only gluten had made me react the same way, I might have tried going grainless a lot sooner to see what would happen. Instead I assumed it was part of aging and growing out of the ability to handle it, as do many adults.

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i would skip the dairy for a little while. for me, it irritated my body's attempt to heal. plus, i was severely malnourished and was wanting to absorb as many nutrients as i could and the dairy just made 'D' worse in the beginning. getting diagnosed saved my life, and my quality of life - soooo many (seemingly unrelated) symptoms/maladies that i had just been "living with" *poof!* - disappeared. (also had a miscarriage :( back in the day...) the gluten-free diet is tricky at first, but soon gets to be second nature. good luck :)

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