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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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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Hopefully this topic hasn't been covered too thoroughly yet...

I was recently diagnosed (well, somewhat diagnosed- through positive bloodwork and by my endocrinologist) with Celiac's Disease and was told to follow the gluten-free diet for the next week before my gastroentrologist appt. I've been following it for a week now. That's all the information anyone has told me, so I have a bunch of questions. The first is the topic heading:

1. Do people with Celiac's Disease also have other common allergies? I know many are unable to tolerate lactose after diagnoses. When I first started the gluten-free diet (I know, it hasn't been too long at all) I felt better immediately. The last two days, however, my symptoms (naseau and bloating) have returned, but with less severity. I was thinking maybe I have other allergies as well, but have no idea how to figure out what they are. Are there any really mild foods I should focus on and others I should avoid? Also, are there certain tests that determine allergies?

2. Last year in the dorms I was diagnosed with a pretty severe case of Mono. I moved back home for a couple of months but wasn't getting better. When I visited the doctor in May, she diagnosed me with Thyroiditis, which supposably was triggered by the Mono. Still wasn't getting better, so she tested me for Celiac's Disease, which I tested positive for. I know thyroid problems are related to Celiac's disease, so my question is: Is mono related to Celiac's Disease in any way? Or was it a wierd domino effect that led me here?

3. Does anyone know of a good way to stop hair loss caused by Celiac's Disease or do I just wait it out? I miss thick hair and eyelashes very much.

4. For when I visit the gastroentrologist in a week: If he wants to do further testing on me, will the results be flawed because I've been on the gluten-free diet? His nurse told me to keep doing gluten-free, but everything I've read says that will give me inaccurate bloodwork, biopsy, etc. I feel that maybe I should start eating gluten again and just tough it out so my results will at least be accurate.

5. Any money saving ideas for the grocery store? This disease is definitely not convienent for the typical starving college student.

Thanks so much for looking over these questions. This site has helped me so much. Just reading the other posts about people who have conquered this dumb disease is so inspiring and helpful.

-Megan

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Do people with Celiac's Disease also have other common allergies?
Some people do... A lot of celiacs have issues with dairy products and soy. I think that corn and eggs are also common.

Does anyone know of a good way to stop hair loss caused by Celiac's Disease or do I just wait it out? I miss thick hair and eyelashes very much.
I had hair loss before I went gluten-free. Once I started the diet, the problem went away B)

so she tested me for Celiac's Disease, which I tested positive for... If he wants to do further testing on me, will the results be flawed because I've been on the gluten-free diet?
was your positive test a blood test or a biopsy? If you have already tested positive for celiac disease by bloodwork they may want to do a biopsy. And yes being gluten-free and give false negative results on tests.

Any money saving ideas for the grocery store?
Cook things from scratch, I know it's annoying, but it will save money ;)

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Hi,

Good luck to you as you go through these changes in diet. You are so lucky to be finding out young what your problems are--the average time for diagnosis of Celiac Disease used to be 10 years! I am 60 and have had symptoms since age 8. You can have allergy testing done, but I did that and it didn't really help. Food elimination experiments on your own would probably work fine. You know better than anyone how you react to certain foods.

My symptoms present themselves as asthma and the inability to breathe when I eat something to which I am intolerant, within 20 minutes of eating it.

Here are some food intolerances I deal with:

all grains

all milk & dairy products (watch labels for casein and whey, milk

derivatives)

egg whites

yeast

maltodextrin

monosodium glutamate

Hope this helps! Welda Lou

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Mono can trigger celiac. That is what triggered mine. It's a domino effect. Thyroid disorders are highly connected with celiac. I have Graves Disease(hyperthyroid)

Also, further testing will not be accurate if you are on the diet so if you need to get more testing then you need to get back on gluten.

If you had positive bloodwork(depends on the tests) you have it. Which tests for celiac were done?

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You might want to checkout shampoos, I had some hair loss and switched to gluten-free Garnier Fructis, Pantene is also gluten-free. I was using Nexxus products and always wondered why my scalp was itchy, I looked at the ingredients and they contain wheat. My disease was triggered by thyroid disease, I had 1/2 of thyroid removed

and symptoms became worse after that. I also have many environmental allergies, and I am intolerant of cow's milk, egg whites, yeast, corn and of course wheat. I discovered this by testing at York labs. There are many mainstream foods that you can eat, I personally don't buy many of the gluten-free foods because of the expense, and I don't like to bake. Most of us have experienced nausea after going gluten-free, I don't know if it is withdrawl but it does go away, in time.

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Hey Guys,

Thanks so much for all the great answers. I really appreciate the help and positivity. It's definitely what I need, especially now. I think I ruined my 4th of July by eating scrambled eggs this morning. The last three days I felt great, but this afternoon has been one of the worst ever. A couple of hours after the eggs I got stomach cramps, naseau, and insane weakness. It's been awhile since I've had symptoms so severe. I'm guessing this is probably a reaction to a food allergy or accidental gluten ingestion. I have no idea why I would react so badly to eggs though, its only been about 4-5 days since I last had them. Can allergies become more severe if you avoid that food for awhile? Also, does anyone have similar symptoms to eggs that I had? If I am egg intolerant, then does it seem reasonable that it took 2 hours before I became symptomatic?

Wclemens, that must be really tough with all those intolerances. Do you have trouble digesting any fruits or veggies (esp. potato)? Does anyone have recommendations for really easy, tummy friendly foods that I can eat while I find out what I am allergic to? I heard berries are good...

And KaitiUSA, it seems like we have a lot in common! The tests I had done were Gliadin AB IGA (neg.), Gliadin AB IGG (pos.), and tissue transglutaminase (IGG) (neg.). Also, after the first couple of days starting the gluten-free diet, I've felt much better- excluding today.

One more question- Can anyone recommend a calcium supplement that is lactose, gluten, soy, rice, corn, and egg free? (I'm guessing they would be egg-free, but who knows)

Thank you thank you thank you! This feedback is really appreciated.

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I don't have an allergy to eggs but I react badly to the slightest amount of dairy, so I understand what it is like having more than one food intolerance. It's good though that you have figured out that you react to eggs.

Can allergies become more severe if you avoid that food for awhile?
For some people this would be true... I know that some people can react worse to gluten after they start the diet. My reactions seem to be worse now if I have a contamination than before I started the diet. I think that the body gets used to not dealing with the food and then when it is injested we get a very bad reaction.

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Hi Meg,

It may be that after being gluten-free for a while, you'll start to notice reactions to things you're allergic to, that while your body was in the throws of gluten-reaction, you just couldn't sense. Does that make sense?

I also tested positive for all the allergens you mention :) I still eat dairy and rice, though, because I tested less positive for those than the others, and I had to eat something. Also, they don't bother me much - probably the rice does more than the dairy. I figure I'll get retested in a year and see if it's the same.

My own personal recommendation, and I know others will disagree, is to not start any supplements at this time. Let your body adjust and adapt and see where you are. I have had BAD reactions to every supplement I've tried, except a digestive enzyme. I tried multi-vitamins, B vitamins, and probiotics - all presumably free of any offending allergen. It took me 2 months to figure out I was having a reaction to the B vitamins. It took me 3 days on probiotics to feel like I was going to die (really!) I feel much better off of everything, except the enzymes (which I love). Other people will have other reactions.

Calcium supplements, IMHO, are overrated, and most sold are in a form that is not very digestable by our bodies. They can throw your magnesium out of balance, which is tied to other things, etc etc. Aim for a balanced healthy diet and give yourself time to heal.

Best wishes,

Merika

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If you notice something makes you sick then deinitely avoid it. Have you considered getting an allergy or intolerance test done to see what other foods you may have a problem with? There are tests you can get for that.

As for supplements...they work good for some people but they are not for everyone. I have had wonderful experiences with calcium, B vitamins, multi vitamins, probiotics, enzymes, etc. They definitely helped me the healing process speed up. I still take some of these supplements to boost my system

Also, do not expect your celiac symptoms to go away so soon...it took me 3 months to feel alot better and then by month 8 I was back to normal. Just pay attention to if your symptoms are more severe after anything in particular. A food journal may help with this.

Feel free to email me anytime...definitely sounds like we have things in common

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1. Do people with Celiac's Disease also have other common allergies? Are there any really mild foods I should focus on and others I should avoid? Also, are there certain tests that determine allergies?

2. Last year in the dorms I was diagnosed with a pretty severe case of Mono. Is mono related to Celiac's Disease in any way? Or was it a wierd domino effect that led me here?

3. Does anyone know of a good way to stop hair loss caused by Celiac's Disease or do I just wait it out? I miss thick hair and eyelashes very much.

4. For when I visit the gastroentrologist in a week: If he wants to do further testing on me, will the results be flawed because I've been on the gluten-free diet?

5. Any money saving ideas for the grocery store? This disease is definitely not convienent for the typical starving college student.

1. As you already noticed, lactose can be a problem until the damage to the villi is healed. You may certainly have one of the other common allergies (tree nuts, peanuts, milk, wheat (you could have an allergy AND an intolerance, but you'd be avoiding it anyway) eggs, fish, shellfish, and soy. While it seems that a number of us do have other food intolerances, I don't know that there are any good comparitive statistics with a control group. The best thing to do is a) have allergy testing, and B) try to do an elimination challenge on the major allergens AND any foods you find suspect. A food diary can help you determine which ones to test and what the results are.

2. There's the theory that celiac needs an environmental trigger, and that great immune stress is one of the ones that will trigger the disease. This may have been what happened in this case. You're definitely not the only one on this board that was diagnosed after developing mono.

3. To the best of my knowledge, you may need to wait it out, and it may just be a change that will not reverse itself.

4. Most docs don't think a week will change the results, but what if your blood tests were borderline to begin with? Then maybe you'll get somewhat inconclusive results that the doctors will interpret as being negative. I just think it's a sketchy idea.

5. Stick to naturally gluten free, inexpensive foods. Rice, beans, and in-season/on-sale produce and meats. Make dishes that stretch expensive food as far as possible. (Chili and soup, for instance, are good for this, as you can use a fair amout of beans or rice as a base, with a little bit of meat, and a wide variety of inexpensive vegetables.)

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KaitaUSA,

I love your posts :) But I have to say yours should come with a disclaimer at the bottom that you are 17? 18?, lol. 8 months to feel better!!! I wish that were my case. For anyone over the age of 25, I think it will take the body a lot longer to heal, just like it does from any other injury. Of course, factor in how long you've been what I call "actively" celiac, meaning hardcore undiagnosed symptoms, and that will affect the prognosis too.

.02,

Merika

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Once again I'd like to thank everyone for their wonderful and always appreciated feedback! So, I think I might have food intolerances, not allergies, because the symptoms take more than 20 minutes to show up. Because of this, I have really limited my diet. I'm trying the elimination method (I think thats the one where you slowly introduce foods) and a food diary to figure out any food intolerances. Right now I'm staying away from rice, potato, corn, soy, gluten, lactose, and squash. It seems like everything except meat, fruits and most veggies are making me sick. But then again it might be just one or two food intolerances that are causing these problems. Or I may have no food intolerances and my sickness is a result of damaged intestines from the gluten.

I'm thinking that I probably have a food intolerance because my symptoms have changed from a nauseous feeling to a cramping, nauseous feeling. But from what??? I don't know how long I can keep up this limited diet, I feel like I'm going crazy from the repetition of it all. Yet it seems like it takes so long to figure out what's making me sick. I'm so impatient. Am I going about this all wrong? Any advice would really help. I feel like I'm stabbing in the dark here. All I keep thinking is that this is the prime of my life and I'm wasting it watching tv and sleeping because I feel so bad.

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Meg,

When you say you are avoiding lactose, do you mean all dairy or are you using lactose-free products? Most of us, not all, have had problems with dairy in the beginning because of the damage to the villi. I've been a year and a half and still can't tolerate dairy. Of course I am older and probably have more damage. For me in the beginning a food diary worked for me because I don't react right away to the offender, it is usually 6 hours or the next day. Also different foods give different reactions. I've noticed that dairy will make my stomach rumble, but I also get leg pains, brain fog, etc.

Also, even though it is boring, stay with very simple foods. I spent a whole summer eating chicken and pork, potatoes, veggies, and applesauce. You must let your tummy heal. Try peppermint teas, just make sure they are gluten-free. Also always start your meals with a soluble food, such as bananas, mashed potatoes, etc. Stay away from fruits with seeds for now. Try to think of it as feeding a baby, start off with very bland foods. I hope this has helped a little. Another thing try not to take vitamins and supplements and make sure all meds are gluten-free. Pretty soon this will all be easier for you and you can pass info on to others.

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Maybe you could ask your doctor about testing for various food allergies and intolerances, then you wouldn't have to wait for the results of an elimination diet. Or if you want to do the elimination diet maybe try eliminating the main foods that cause problems first like dairy, corn, nuts, soy, eggs, and obviously gluten.

Also, if the villi in your intestines were badly damaged due to gluten ingestion, then you will have trouble digesting lactose, sugar, and starch. When the villi are severley damaged or flatened they do not contain the enzymes to break down, these sugars; lactose, sugar, and starch, resulting in digestive problems. Therefore, instead of an elimination diet, you may want to avoid lactose, sugar, and starchy foods (eg. potatoes and corn) for awhile and see if these are the problem. Since you were recently diagnosed with celiac this could be your problem and you may have to avoid these foods until your intestine heals, which may take several months depending the extent of damage.

Hope this helps B)

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KaitaUSA,

I love your posts :) But I have to say yours should come with a disclaimer at the bottom that you are 17? 18?, lol. 8 months to feel better!!! I wish that were my case.

:lol: I'm actually 18 in about a week.

It does take longer to heal the older you are. It also depends on the extent of damage done because I have seen older people get better quicker then I did after going gluten free. So I think there are many factors involved.

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I think Kaiti is right, more damage = longer healing times. I was 22 at diagnosis (now 24) and it took me about 1 year to get better, and I am still not 100% some days, very close though ;)

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