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ValyntineM

Is Celiac The Answer?

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Hi there :) I'm new to the forums and had some questions if you don't mind. I apologize for what I know will be a long post. Thank you ahead of time if you get through all of it.

I came across this website (and many others) while on a quest to fix what has become terrible psoriasis on my scalp. It has come and gone most of my life, but over the past few months has become absolutely ridiculous. I originally came across something suggesting that aspartame would make my symptoms worse... and I drink a LOT of Diet Coke so I figured it was worth a try to cut it out of my diet.

However, Celiac disease kept popping up in my searches so I decided to read an article or two. Then I read another. And another. And 10 more. I was floored by the information I discovered. I do know what celiac disease is. I dated a guy several years ago who's mother had it. To be honest, I mostly just thought she was annoying about the whole thing. I couldn't understand how eating just a TINY bit of wheat could flip her out so badly. I know better now that I know more people afflicted by it.

However, I never really knew anything about the symptoms or what gluten intolerance does to the body. Now that I'm more aware, I wonder if this is what I have been suffering with my entire life.

As a very small child, I was diagnosed with chronic migraine headaches, but other than that was fairly healthy. At age 11, I contracted what was believed to be Mono. I say it this way because I never technically tested positive for it. However, all the symptoms were there, so my doctor's assumed that MUST have been it. Unfortunately, even after months of rest, my symptoms never went away. My glands stayed swollen (to this day, actually. 19 years later. It perplexes doctors) and I was still exhausted most of the time. My parents carted me around from doctor to doctor. We heard every theory from sleep apnea to chronic fatigue syndrome... but nothing was ever certain.

These symptoms continued for a long time. Sometimes they would subside, but they always returned. When I was 17, I was told that I was simply severely depressed and put on Prozac. That helped in the amount of ZERO, so I was eventually diagnosed with Chronic Fatigue Syndrome.

Since then, I have been afflicted and in most cases officially diagnosed with psoriasis, carpal tunnel syndrome, anemia, Vitamin K deficiency, Vitamin B-12 deficiency, Sleep apnea, night terrors, ADD, hypoglycemia, chronic sore throats and throat infections, unexplained ulcers and canker sores in my mouth, chronic stuffy and/or runny nose, diarrhea or constipation (normal bowel movements are VERY rare for me. It's always one or the other).

My pregnancies were very difficult. My first child was born 7 weeks premature for no known reason. I had terrible morning sickness every day of that pregnancy and was miserable. I began bloating in ridiculous amounts at 8 weeks pregnant. By 12 weeks, I looked as though I was more like 5 months pregnant. My second pregnancy ended in an unexplained miscarriage at 11 weeks. I spent most of my third pregnancy on bed rest due to unexplained bleeding, risk of premature labor due to constant contractions and poor personal health for no apparent reason. Again, the bloat was insane almost immediately. I went from a completely flat stomach (I am very small and petite when not pregnant) to looking again, 5 months pregnant at about 12 weeks. It was incredibly embarrassing. My son was born at 38 weeks gestation, but was very small and they speculated that I may not have been as far along as they thought. I have been advised to very seriously consider not having any more children.

When I'm not pregnant, I take Adderall for ADD. This is also an appetite suppressant, so I only eat one or two meals a day. I am still losing baby weight (my 2nd child was born in April) but normally my body rests at about 110-115 lbs. Even when I don't take medication, I watch what I eat and it is rare that I weigh much more than that... even though when not on Adderall, I have the appetite of a teenage boy. During pregnancy, however... I gave in to my ravenous appetite and ate so much it was actually kind of funny.

In light of all this, combined with everything I've learned about Celiac... I can't help but wonder if this is the answer to all my (seemingly unrelated) health problems. I feel like my body's just kind of falling apart piece by piece... and now I think that this might be why.

If there's a better explanation, I would love to hear it. Does this sound like Celiac to any of you? Or am I simply web diagnosing myself with small connections? What's the best way to rule out or confirm celiac?

Is it worth taking the time, money and energy to get officially diagnosed?

I'm trying to decide whether or not to go through that process OR just immediately remove all gluten from my diet and see if it makes a difference in my overall health. Which is the *right* way to do things? Or is there a *right* way?

Once gluten is removed from my diet, how long before I can expect to see some results? I'm sure it varies greatly... but what's a reasonable time frame for me to consider?

To be diagnosed, to I have to see a specialist of some kind?

I appreciate any of you that took the time to read this and I look forward to getting some feedback. Thank you :)

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I should add:

Gluten is in almost everything I cook. I'm Cajun and have a large family. My husband and I have four children between us... So I generally make big pots of things. Stew, gumbo, sauce picante, soup etc. All of it is made using roux (cooked flour and oil) as a thickening agent. I use it in just about everything, honestly. I didn't use to cook this way, but I have for the last year or so and my health has been deteriorating again for the same amount of time.

I eat a lot cereal (with gluten)

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And a lot of sandwiches. Wheat bread, lunch meat, mustard, cheese and tomatoes.

Tons of pasta as well.

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Wow. You sound like a CLASSIC celiac! I'm not a doctor, but I would bet a lot of money that that is what you have. My symptoms were much milder than what you describe, but I can tell you that after 14 months, my psoriasis is gone. TOTALLY gone. And it was the psoriasis that led me here. My poor sweet mother had psoriasis for years, and when she was diagnosed with celiac in the mid-80's it cleared up totally and permanently on the gluten-free diet. Back then no one made the connection. But I googled the words, psoriasis and celiac, and they brought me here.

I never knew that my insomnia, brain fog, thinning hair, swelling ankles, heart palpitations, and mild bathroom issues were caused by celiac too, but now that I am finally healed, all of those things have either gone away or are getting much better.

It's up to you whether you get an official diagnosis or not. A lot of us just went gluten-free and when our symptoms got better, that was a good enough diagnosis for us. If you DO decide to get tested, it is very important that you continue to eat gluten. Even a week or two of gluten-free will often result in a false negative.

How long does it take to feel better after starting on the gluten-free diet? Well, like me, a lot of folks here noticed a difference within a few weeks. But usually there are setbacks. It's almost like the "gluten god" gives us a taste of what good health feels like, then rips it out from under us again. But that little taste gives us something to shoot for, and it confirms that we are better off being gluten-free, even if we do have setbacks.

A lot of us develop secondary intolerances. Our bodys are so damaged they mistake all kinds of things for gluten. It is best to start with whole foods only - nothing processed, even if it IS gluten-free. Keep a food diary, jotting down everything you eat (including medications) and how you feel each day.

There is a sticky at the top of the forum for newbies that can help you to make SURE you really are gluten-free. Gluten hides, not so much in food labels, but in our kitchens and even our personal products. Check that thread out, and then read as much as you can here in other topics. You will learn a lot.

It can be overwhelming at first, but we are here to help. If you have questions, feel free to ask. If you need a shoulder to cry on, we all have big wide shoulders and are more than happy to let you vent.

And it might help to keep in mind that you don't need medications or surgery to get well. Just a vigilant diet, a lot of patience, and believe it or not, you will find that there are a LOT of really good things to eat. And you will feel SO much better.

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So sorry for all you have gone through, but you are not alone with a wide variety of symptoms that "could" be related to Celiac Disease. And yes, your symptoms could be Celiac.

I'd vote for getting a full celiac blood panel before going gluten-free, because once gluten free you won't be able to have these tests done - depending on results of blood work you have choices: Endoscopy &/or gluten-free Diet. Your primary or gastroenterologist can have these run for you.

Full Celiac Blood Panel:

Total Serum IgA

Tissue Transglutaminase IgA and IgG

Gliadin IgA and IgG

Endomysial Antibody IgA

Deamidated Gliadin Peptide IgA and IgG

Also, you already mentioned you have had low vitamins/minerals / possibly not absorbing nutrients properly - another indicator of Celiac Disease. So you might want to have these drawn at the same time as the Celiac panel.

Misc blood tests:

Bs, D, K, Iron, Ferritin, Copper and Zinc

If you are SURE you don't want a diagnosis - you can start with a strict gluten-free diet right away for at least three months. The length of time for you to see improvement is impossible to guess. Some see results within days, some weeks, some months - if Celiac has gone undiagnosed for many years it can take a very long time to heal from the damage. The important thing to do is note ALL changes, even very small ones. For me the first thing I noticed was a change in my hair and fingernails.

Getting all the gluten out of your diet is tough, but it does get easier once you get thru the learning curve. This forum is a great resource of all of your questions...there are always folks willing to help where they can.

Good Luck to you :)

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Thank you so much for the replies.

I'm not sure how I feel about an official diagnosis. My husband thinks I should get one... But I'm not sure I see the point, I guess? If the treatment is a gluten free diet, then I can achieve the same results myself without a diagnosis if I DO have Celiac.

If I don't, life will go on as per usual. I've been tested for every ridiculous thing under the sun and they've never found an answer to all my issues... So I won't really lose out on finding out what's wrong with me if I assume this is the answer.

That said, I don't want to have to convince anyone in my life that this is the problem in order for them to take me seriously. I suppose if I got officially diagnosed I could say to my husband/kids/extended family "Hey. I'm allergic to this stuff" rather than that I think I just MIGHT be.

But at the same time... I don't know when I would even be able to afford getting tested for this. So until then I have to keep eating the stuff?

Ugh. I don't know. It's so confusing!

And going gluten free... Whew! I don't even know where to start! I suppose it won't be too hard once I make the initial leap... But it's in SO much stuff! I checked it out and It's even in the lipgloss I've been using for the last 5 years! (Coincidentally, my lips are always chapped and cracking. ALWAYS. Related or annoying coincidence?)

The best reason I can come up with to be tested is my kids. My infant lost tons of weight while breast feeding and continued to have digestive issues until we switched formula brands several times. The one he is on now is gluten free. My other son was lactose intolerant for the first 3 years of his life but has outgrown it and is very healthy. But, if I do have celiac disease I would want them tested as well.

Also if theres a chance that I could have a normal pregnancy with a gluten free diet... I might want another child.

I don't know.

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Yes, you definitely sound like a celiac. Get tested, pronto. It is common for people to try the diet, feel some better, but not perfect, and then question if gluten is really the problem. If you get a positive test, there is no doubt.

If your tests are negative, give the diet 100% compliance for a good 6 months. Chances are you will see real improvement!

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More pieces to the puzzle are coming together:

Like I said in my first post... I was originally looking for a fix for my psoriasis when I came across this site. I have THICK hair... I've honestly never met someone with hair as thick as mine. It's also LONG... to my waist. I've always had psoriasis issues... some worse than others... but the only dermatologists I went to told me I would need to cut it very short to treat it with injections or UV therapy due to it's thickness. Which I refused to do because... I don't know, because I'm vain about it, probably.

Anyway, over the last several months it has gotten unbearable. The scales are so thick that they're ripping out my hair follicles. They scab over. They bleed. It's absolutely disgusting. And NOTHING I've tried is working.

I don't really have a "regular" shampoo. I like Paul Mitchell's line, but will use any of his products so I tend to jump back and forth. In May, my husband got his hair cut at a salon and fell in love with Paul Mitchell's tea tree shampoo and conditioner, so we bought huge bottles of each and we've been using them ever since.

Recently, my husband mentioned to me that he thought it might be making my psoriasis worse. And then one day, I realized that I still had conditioner in the folds of my ears that I hadn't washed out in the shower the night before. I was in the car, so I simply cleaned it out with a napkin. No big deal. But a few hours later, I broke out in psoriasis scales exactly where that conditioner was. That lasted about two weeks and it was very painful. I've had it in my ears before, but very sporadically. Anyway, based on that incident I definitely agreed with my husband. The shampoo and conditioner must be making it worse... but I had no idea why.

Tonight, I looked at the ingredients. They both contain wheat.

That's pretty much all the convincing I need at this point. I have found the problem. At the very least, I must have some kind of allergy or intolerance to gluten. Maybe it doesn't explain ALL my health problems... but it might. Clearly there's SOMETHING going on. That's just too much of a coincidence to me.

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