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    Do you have questions about celiac disease or the gluten-free diet?

Guest Kahlua

Do I Belong Here?

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Guest Kahlua

Wow... I just found out about Celiac Disease earlier today on WebMD when I was doing some searches, and I think I might be a candidate... or perhaps I have a gluten intolerance (not really sure what the differenc is)... but I just don't know. Originally I thought I had an internal parasite problem. I'm very confused right now and honestly more than a little scared. I was actually dealing with the internal parasite theory way better than I'm dealing with this gluten theory.

If you all don't mind, I'd like to give you some background and get some opinions.

I've always been healthy, never had any problems whatsoever. I got pregnant when I was 29 and coasted through an easy pregnancy, easy delivery. I got pregnant again last year and the pregnancy was tougher on me this time, but still relatively easy... no real problems, no sickness... just things like vericose veins and I was more tired... but then again I was 5 years older and had a preschooler to deal with. We also have a farm with a ton of horses that I pretty much have to take care of by myself, so being tired and stressed out is normal for me.

In addition to the vericose veins, I developed a few of what I thought were probably spider bites on my legs... lumps that weren't that big but they just didn't go away. My Dr. acutally opened one because I'd had it for a while and we wanted to see what was in there... a little bit of what appeared to be pus with a tinge of blood came out. These places wouldn't really heal, though, they just remained sort of dark and you could still feel a bit of a hard lump under the skin. They also itched quite a bit. The lump part eventually disappeared but you could still see that the spots were darker. My scalp itched a bit and had some flaky areas. I chalked this all up to pregnancy hormones.

Fast forward: About 6-8 weels after the delivery (which was problem-free) I started defacating mucous. I also started to have sort of flakey stools, more mucous and sort of explosive air than actual stool. This happens a lot, especially in the mornings. I started to have a "rumbly" stomach and could feel movement quite often, like what I felt when I was pregnant. There have also been some cramps. Also, those skin places are bothering me again, but they're different this time. No lumps, just sort of scaley dry patches. I also believe that my hair is thinning a bit. Also, my cycles have benn ridiculously regular my entire life... every 28 days for 5 days like clockwork, and over the past 4 months or so I have absolutely no idea when I'm going to cycle or how long it will last.

I've honestly just blown a lot of this off, the cycling, hair, being tired, as after effects of pregnancy and figured my hormones are still out of whack because I'm nursing. A couple of months ago I was looking up symptoms on the internet and came to the conclusion that I have internal parasites, which is reasonable since I'm on a farm and work around tons of animals, stagnant water, you name it. I found some detox things that are supposed to take care of parasites but they didn't recommend doing it while nursing, which I'm still doing, so I thought I would just wait until the baby's weaned and go from there. I'm not a medicine person, never have needed it... and wouldn't take anything while pregnant or nursing anyway. My baby's 9 months old now and I'm still nursing, but I've been having these problems for about 8 months now.

Today I found this site and honestly it is scaring me to death. I'm wondering if this could be my problem... my aunt is gluten intolerant but I don't think she has Celiac... but nobody else in my family has any problems, at least not that I am aware of. I'm reading about all the related problems and that scares me even more. I've always been so healthy, could this really be my problem or should I stick with the internal parasite theory?

Also, my 5YO is pretty hyper. Everyone has always told me that it's just because he's a boy, but he's just non-stop all the time. He's thin, but tall for his age so I wouldn't say his growth is stunted. I'm reading about the genetics of this and the behavior corellation and wondering about him now too.

What do you guys think?

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While it's not classic symptoms, it's not outside the possible either. I would suggest that you ask your doctor to run the full blood panel on you (serum IgA, anti-gliandin IgA and IgG and tTG IgA and IgG to see if there are wheat protein antibodies or particular autoimmune antibodies in your blood. Don't try going gluten free until then, of course.

(I know my answer is short, but I'm excessively practical, and don't really know what else to say. Lots of others will have friendlier welcomes. :):D )

Welcome to the board!

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Guest Kahlua

Thank you for yor reply. I have another question... I somehow hit send twice on my original message and can't figure out how to delete the other one... help????

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Thank you for yor reply. I have another question... I somehow hit send twice on my original message and can't figure out how to delete the other one... help????

Don't worry. I'm sure a moderator will take care of it for you.

Welcome to the forum. I'm no expert and it's getting late, but I agree with tarnalberry that it's not outside the realm of possibilities. I didn't have "classic" Celiac symptoms either.

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Hi Kahula,

The symptoms you are explaining could be those of IBD. Read more about IBD here: http://www.ccfa.org/info/about/?LMI=3.0 I have been having problems since June and have been diagnosed with Ulcerative colitis. I had the mucous and the explosive diarrhoea in the very beginning. I acutally got worse after a while and was hospitalized with diarreah that wouldn't give in. The fatigue and bumps could be warning signs of a flare up, as well as join pain.

Both Ulcerative colitis and Crohn's Disease has a number of associated skin lesions. The bumps you are explaining might be called Erythema nodosum meaning "red bumps". You can read about them here: http://www.ccfa.org/info/about/complications/skin

As far as you cycle goes, that could be from your pregnancy. I would have a colonscopy done if I were you.

Hope this isn't your problem, but it does need to be checked out. Treatment early on is very important.

Keep us posted.

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I don't know, you aren't ringing any of my Celiac bells but I am no expert and no doctor and I might even be short on Celiac bells :D maybe it can hit people like that. I have seen a few women posting and talking about pregnancy and perhaps they will be along shortly and more helpful than I.

I tend to think that many people who have gluten problems have kind of known about it for a long time. I think your parasite theory sounds possible.

There is a parasite cleanse that is salt and vitamin C, I am doing it because of Lyme disease and because I lived in the mountains and drank unfiltered water, it works and I will spare you the details. If you want more information PM me.

A gluten free diet has many benefits regardless of whether or not someone is Celiac, if you continue to have digestion issues, regardless of diagnosis, it is worth exploring.

Welcome to the board, I hope you can find some answers soon.

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Guest nini

the easiest way to find out if it is a gluten intolerance is to try the diet and if your symptoms start to clear up, you have your answer, and if they don't, keep looking! Pregnancy can certainly trigger Celiac with all it's weird manifestations, and if you were to get tested for it, because you probably haven't had it very long (if that's what it is) the testing might be negative even if it is a gluten intolerance or Celiac, so my personal thought is to try the diet because it's not bad for a nursing mom, and you would know fairly quickly if that is what is causing your symptoms. Or you could try testing and still not have any answers. If you don't get better on the diet, you haven't really lost anything, because you said you weren't going to try the parasite cleanse until you are done nursing anyway.

As far as kids go, the testing is notoriously unreliable in kids and dietary response is the best indicator...

A lot of people on this site have used Enterolab to get answers, that may be a route you want to explore.

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I second tarnalberry's advice. Especially since you've got an aunt who has problems with gluten. These things run in families! You could also go to a dermatologist and have him/her biopsy your rash. But make sure it is a dermatologist who is familiar with Dermatitis Herpetiformis (I always spell that wrong :huh: ) and has done this procedure more than once. (There are right and wrong ways of biopsying DH. (Boy, I'm making up words and spellings all over the place! :D ) I can't tell you what all the right and wrong ways are, but I know they exist . . . so find a dermatologist who DOES know, or is willing to research it VERY thoroughly before doing it.) If you've got clinically diagnosed DH, you've got celiac, too.

Don't be scared by the thought that this might be your problem. It can be a little overwhelming at first, but going gluten free (when you've got celiac) can help you avoid a host of other problems down the road, and you quickly become accustomed to the diet.

And welcome! If you find out that you do need to eat gluten free, this is a great place to come for support and advice.

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Guest cassidy

When I went gluten free I wasn't feeling totally better so I went to the doctors. They did a 3 day stool test and found out I had a bad bacteria, an amoeba, candida overgrowth and almost no good bacteria. So, whether you have a problem with gluten, or with parasites, I would recommend going to the doctors because you could have both. I would never have been able to figure that out myself and I felt so much better after I got rid of all of that. I was on two very nasty antibiotics which I thought were going to kill me and I don't think any parasite cleanse would have been able to get rid of them.

Trying the gluten-free diet is always a good thing to do if you have concerns that this may be wrong with you. That is something that you can do while nursing since you aren't cutting out anything that the baby would need. You could always try the diet and then when you are done nursing either you will be feeling better, or it would be time to examine the parasite theory.

My mother and I have totally different symptoms so just because yours aren't classic doesn't mean anything. If you try doing a separate post about the skin issue you might find other people that have something similar but didn't read this general post.

Many people have negative blood tests, including myself, so please realize that even if you have a negative blood test it doesn't mean that you don't have a problem with gluten.

You might also talk to your aunt and see what she has to say.

Hope you figure it out.

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Guest Kathy Ann

If a person has the genetics for celiac, active celiac disease usually requires a trigger (stress) sometime in that person's life to get it started. Pregnancy is frequently it. Many of your symptoms are classic celiac and gluten could well be your problem. I'm no expert, but here's what I would do to get answers if I were in your situation.

I would get a set of tests, including the genetic one, from Enterolab.com. It does not require a medical doctor, but your insurance will also probably not pay for it without one. But that's what I did. Those tests will tell you if you have the genetics for celiac which will be useful information for your children as well. They will also tell you if you have active autoimmune celiac or gluten intolerance going on and if there is already any damage to your intestines.

You could also get a regular set of celiac blood tests from a medical doctor which will definitely show celiac in its 'advanced' stages. They are easy, but if you do have celiac, but in the beginning stages, they will often give you a false negative result. Your doctor at that point may pronounce that you don't have celiac, when you really might have it. You could end up more confused. If the tests are positive, then the doctor will probably want to go ahead and do a biopsy to give you an official diagnosis.

Enterolab's tests are informative enough in my opinion. But they are unfortunately not yet accepted by the general medical profession and are pricey if you have to pay it yourself. But many of us on this board have accepted the fact of being self diagnosed using the methods I have just described.

I wouldn't stop eating gluten until you at least do testing of some kind. Once you quit gluten, it's harder to get accurate test results and you sure don't want to have to start eating gluten again once you stop, especially if you start feeling better. I would do something pretty soon, though. No use doing any more damage if gluten IS your problem.

Some people don't do any testing and just experiment by stopping all gluten. If they feel better, they consider that a diagnosis in itself. It depends upon your personality and how much concrete evidence you need to faithfully remain gluten free for the rest of your life.

Hope that helps. :)

.

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I think you should pursue celiac testing. Especially since gluten intolerance has appeared in your family. The bowel issues as well as the tiredness, possibly the skin stuff sound like something that should at least be looked at. Even if the testing comes back negative, you should try the gluten-free diet just to see what happens. It's not as hard as it sounds. I'm gluten intolerant rather than celiac and my symptoms are a little different than just classic celiac. My kids are also gluten intolerant. My 4yo daughter used to bounce off the walls and just never slowed down. Since I put her gluten-free she's still active but isn't bouncing off the walls. She even sleeps better now.

It's my opinion that anyone with IBS type symptoms should at least be tested and try the gluten-free diet. It certainly couldn't hurt. And I'd hate to have someone not at least give it a shot and end up being sick and progressively sicker for 18 years like I was.

There's also the possibility that it isn't celiac or gluten intolerance, but an intolerance to other common foods such as soy, corn, dairy, etc.

Edited to add: Rinne mentioned that she thought that most people with a gluten problem may have known about it for a long time. From my own experience and what I've seen on this board, I think the exact opposite is the case. If I had even suspected that gluten or some other type of food was what was causing the problem, I would have tried it years ago. They also estimate that 1 in 133 people have it, with only something like 2% knowing that they do. So I think it's really a matter of whether other people in your family have gluten intolerance or celiac (therefore having at least heard of it and familiar with the symptoms). In general though, I don't believe most people have heard of it.

Nancy

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Guest Kahlua

I want to thank everyone for their responses. I'm not quite as horrified by the possibility of this now as I was last night, although I'm still very discouraged. What scares me is that pretty much everything I currently eat and enjoy would be off limits if I have to go this route. I could live off of cereal, breads, and pastas with the occasional cookies and brownies thrown in. Sounds like all of that would be out.

I've been reading through this web site, there is such a wealth of information here and quite honestly it is completely overwhelming. As I've been reading, I've noticed other symptoms mentioned that I'd forgotten to put in my original post, mostly tingling of hands and feet, and also often that "head rush" feeling when I stand up, where my vision blurs to nothing and I just have to stand for a minute and wait for it to reappear.

From everything I've read, I'm getting the impression that the most accurate and useful "test" at this point would be the genetic one, but I haven't gotten deep enough into the information to learn how that test is done or where, and if it's covered by my insurance, etc. I guess that might be my next step.

Again, thank you all so much... if this does become a part of my life, I'm sure I've found the best group of people available to help me through it.

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If it helps, I had a HUGE appetite and ate almost nothing but gluten-containing things. I was either eating or actively using every ounce of willpower I had not to eat. I was always hungry and always craving cookies, bread, pasta, etc.

After going gluten-free, it didn't take long before I really didn't care one way or the other about any of it. Now, I've found so many good gluten-free substitutes that I don't miss out on much of anything. I also don't have cravings very often anymore.

I've got a theory (not sure if this is backed up by any research) that sometimes the body interprets a variety of different signals from the digestive system as hunger. I think that our digestive systems get so irritated and inflamed that we interpret that ache as hunger rather than pain.

The thing that many people who have been gluten-free for a while struggle with most isn't cravings for gluten-containing food, but the loss of spontanaity (sp?) in food. You have to plan everything ahead. Which is a pain, but it's totally worth it for feeling so much better.

As far as the food you think you'll be missing, there is not a reason in the world that you have to miss out on cereal, pasta, cookies or brownies. There are tons of gluten-free options. It takes some trial and error to find something you like because just like regular bread, for example, not everyone likes every type of bread there is and have their preferences. I've never been a big brownie fan, but there are gluten-free brownie mixes that people here RAVE about. So I don't think you'll have any problems there.

Nancy

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Edited to add: Rinne mentioned that she thought that most people with a gluten problem may have known about it for a long time. From my own experience and what I've seen on this board, I think the exact opposite is the case. If I had even suspected that gluten or some other type of food was what was causing the problem, I would have tried it years ago. They also estimate that 1 in 133 people have it, with only something like 2% knowing that they do. So I think it's really a matter of whether other people in your family have gluten intolerance or celiac (therefore having at least heard of it and familiar with the symptoms). In general though, I don't believe most people have heard of it.

Nancy

That is interesting, I know that in my family two of my siblings have tested positive for Celiac, a sister a few years ago but the information was not shared with all of us until May and a brother recently, another four of us have been aware that wheat is an issue for years, we just didn't understand about gluten. When I found out about Celiac last May I quit eating all gluten that day and haven't voluntarily consumed any since then. I spoke with my nephew not long ago about pizza and the feeling I used to have when I ate it and he related to that immediately. I have a niece who is having major digestive issues and has cut all gluten from her diet. Also, I have long been part of the organic community and I have found quite a number of people eating organically avoiding wheat also although many of them will eat a little spelt or kamut. It seems I have been out of the mainstream for so long I was unaware that people could be so unaware. EEK! Sorry, that sounds awful but it just blows me away that people wouldn't know that what they were eating was causing them to feel ill.

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I agree with Nini--the best test is to try the gluten-free diet and see if you have a good response. Blood tests can have false negatives, as can biopsies, so I don't really see any reason to go there unless the gluten-free diet doesn't change anything for you. If it makes no difference, you can always go back on gluten later.

I totally freaked out when I found this webite when I was researching my symptoms in January, so I know how you feel. But it turned out to be far simpler than I had expected, and I've been able to find fantastic gluten-free recipes for everything I loved from the gluten world except for Malt. I've also learned to eat much, much healthier than I had been, and lost some of my extra poundage with very little effort just from cutting out gluten!

Anyway, welcome to the board!

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Rinne - I know what you mean. Now it's a big DOH! for me. If your food isn't agreeing with you, it must be something you ate. Seems so simple, but my gosh I never connected it. I think that part of it is that people don't feel right about complaining to their doctor about something that there is a whole aisle full of stuff at the drugstore for. Between antiacids, pepto, immodium, fiber supplements, etc., most people think that they can deal with it on their own. My dad had a messed up stomach for years and ate antiacids all the time. But he was a man, and a Marine, and he wasn't going to complain about anything. He died of stomach cancer in 2004. He also had migraines, skin symptoms, depression, anxiety and ADD which he could trace back to his childhood although it wasn't diagnosed until he was in his 50's.

Looking back on my distant family history, there were some signs. I remember my mom talking about her mom (who was schizophrenic, which is now suspected to be related to gluten in some cases) eating "gross" cookies called digestives (glutino makes them) and that she was paranoid because she thought she was allergic to all sorts of things. Which my grandfather always told my mom that it was all a form of neurotic paranoia secondary to the schizophrenia. My poor grandmother probably had celiac and nobody believed her. It's a story we hear all the time on this board. It all makes SOOOO much sense now.

You're so lucky to have had it on your "radar", so when things start not seeming right, you know that there's a possibility that gluten could be an issue. For me, finding out that gluten causes an issue in some people is like finding out that water causes an issue. It seems totally insane.

My stepmom has known she can't tolerate wheat (due to doing an elimination diet) since the mid-1990's. I think that she actually has celiac disease. But she doesn't avoid cross contamination or hidden sources of gluten, and I know for sure she "glutens" herself at least once or twice a week. I've tried to talk to her about celiac, but she doesn't want to hear about it. She just thinks it's great that I've figured it out for myself and my kids, but doesn't want to think it has anything to do with her.

I think that in the next several years most people will have heard about celiac and gluten even vaguely, the same way most people have heard of diabetes, peanut allergies, or even lactose intolerance.

Nancy

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Your symptoms are definately that something is affecting your immune system. It could be something simple as a food allergy (IgE &/or IgG) that you're unaware of, or could be celiac, or thyroid (if you're in your 30's you should probably have this tested just in case), or diabetic issues.

With your family history of an aunt intolerant to gluten, chances increase that any of the above mentioned may be a problem if not more than one of them. I would probably consider Celiac or gluten intolerance to be the best bet though.

You definately should get those lesions/sores/whatever checked out. Whatever the doc thinks it is, might help you narrow down what might be the cause.

Hyperness in children can also be hidden food allergies/intolerances, celiac, etc. but it could be nearly anything. Since he seems to be rather healthy, I wouldn't worry about it until you figure out your own health issues. If you do have celiac or gluten intolerance, then you may want to also have him tested just in case.

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I used to eat wheat three times a day - cream of wheat for breakfast, a sandwich for lunch, and pasta for dinner. You get used to not eating those things, or you find substitutes, though at first it seems impossible. There is a great brand of pasta called Tinkyada that tastes just like the wheat stuff. I thought giving up gluten was hard. Then I thought giving up dairy and gluten was hard. Then I thought giving up corn, dairy, and gluten was hard. Then soy and nuts got added to the list of no-nos. The hardest diet I ever did was the Specific Carbohydrate Diet, which made all of these look like a cake walk in comparison. I have to say in retrospect that giving up gluten is not that hard!!

When I was having loose stools and diarrhea, I thought maybe I had a parasite, but tested negative. That was 7 years ago. More recently, I went through all the parasite/pathogen testing again and found out I have an imbalance of bad bacteria (called bacterial dysbiosis). I'm treating it with Chinese herbs prescribed by an acupuncturist. Like others mentioned, you could have gluten sensitivity and some kind of pathogen thing going on, so it's worth it to get tested for both. Make sure you get good testing for parasites and pathogens. Not all labs test for the less common parasites and bacteria. Also make sure that you get tested for Candida.

Check out The Gluten File for information on how to get tested for celiac disease and gluten sensitivity. I think you should do more than just the genetic testing, because you can have the genes and not have celiac disease.

If you are stressed out, then that will affect your adrenal glands, which will affect your hormones, and will affect your immune system. If your immune system is weak because your adrenals are maxed out, then you will be more susceptible to intestinal parasites and pathogens. It's a vicious cycle. If you have the means, see an acupuncturist as well. That will help with your hormones and stress. I am doing this myself, so am speaking from experience. The Chinese medicine definitely helps.

Claire

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My tests have come back negative repeatedly, and believe me, I've tried so many times to trick my body into eating wheat. With or without positive test results, my body lets me know immediately upon eating the slightest amount of wheat, that my body hates it, but especially my stomach.

Even the slightest amount in corn dogs or in fried chicken or one small bite of bread, my heart races and I get diarrhea almost immediately. My body will ache for days afterwards, every bone in my body will hurt, and I end up with even worse acid reflux and asthma than I normally have.

I could never eat enough wheat to make any test positive, and it doesn't matter what the tests say. My body refuses to accept the results of a negative celiac sprue test.

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