Self-diagnosis

[Saw]

I'm a newbie to this site. I would love anyone's input on my self-diagnosis! In Nov. of 2003 I started getting horrible reactions on my face- swelling and itching (it would start at my mouth and then spread thru-out my face) It was horrible and would last for about a week... I missed sooo much work. This happened 2x a month! Then more symptoms developed- finger tingling, joint aches, finger stiffness and extreme tiredness. All the auto-immune type tests came back ok (a relief), but no diagnosis. Two of my doctors had the nerve to tell me that "I just need to relax"!!! They were useless, after months of tests, alot of frustration, I started a food diary and eliminated wheat......eventually gluten from my diet. After about 4 months (started April 04) on gluten-free diet, I felt great. My symptoms are odd and don't fit the gastro symptoms of celiac disease. Now it's been a year and I feel the need to get a diagnosis. Any input on my next step- since I've been gluten-free for a year? Also, does anyone else get facial swelling (that begins at the mouth 2 days after eating gluten)? Thanks!!

[ianm]

I am self diagnosed since early 2004 and see no need for an official diagnosis. However If you feel it is important then do it. I went to so many doctors and not one of them ever suggested a food intolerance. I was so sick for 36 years that I just can't bear the thought of eating gluten again. I nearly lost everything I have because of this. I am starting to get my career and personal life back on track and to be knocked out of action for a test is something I just cannot afford to do. I am also a single parent so my son needs me to be as healthy as possible. The way I see it the only "cure" is the gluten free diet so a formal diagnosis isn't going to help me. All I know is that I am healthier at 37 than I was at 17 because of the gluten-free diet and that is all I need to know.

No face swelling but my gut was another story. Extreme fatigue, brain fog and weight gain were the worst of my symptoms.

[Saw]

Thanks for your input. I would like to know if I have celiac disease verses gluten sensitivity- is there REALLY a difference between the two? I'm also wondering if I should see a nutritionist.

I feel very fortunate to have found a fairly quick "cure" for my symptoms. I have been reading other's stories and how many years they have been sick (ianm- you are such a strong person to have gone thru sooo many years of illness)... I feel very grateful to feel good again.... It's because of other's telling their stories, that I am well today. I'm also much healthier- no more processed foods! I can't believe how bad I used to eat (although I miss ALOT of "good" food- Pizza!).

Also, brain fog- I can relate, I used to mix up words or not be able to access words when talking to others, I thought I was going crazy!

[judy05]

Yes, there is a difference between Celiac and Gluten Sensitivity. I was diagnosed as Gluten Sensitive because I had a neg biopsy, no intestinal damage and was Neg for the Celiac gene. However, if you have the gene you can be gluten sensitive without damage to the villi, but if you continue to eat gluten you will probably develop damage and will have a Celiac diagnosis. There is another school of thought that those of us with Gluten Sensitivity also have Celiac without having the gene. There are supposedly other Celiac genes that haven't been discovered. Hope this isn't too confusing, in any case we all must be gluten free for life.

There are over 200 known symptoms and all of us have different reactions which makes it hard to diagnose. I saw a dietician but she didn't help me the way that this board has. Most of the foods you miss can be substituted with gluten-free foods. I try not to eat many processed foods and I have other food intolerances.

[KaitiUSA]

I am not self diagnosed but since you have been gluten free for a year your blood test and biopsy would show negative since you have been off of gluten. If you want an official diagnosis you will have to be on gluten heavily for a good 3 months.

The face swelling seems like a reaction you are having to the gluten. Do you really feel you need a diagnosis with all the problems it is causing you?

[ianm]

You said you missed a lot of work because of this. Do you really want to go back on gluten and miss more work? I'm not sure if the test is worth doing if you have a lot of responsibilities.

[Saw]

Thanks for everyones input! I definitely do not want to miss anymore work and do not want to be sick again! I'm working two jobs and in graduate school...no time to be ill. However, I would like to know if I do have celiac disease because of the genetic component (plan on having kids in the future). Maybe I could just get the genetic test done?? Also, is having celiac disease a more serious condition than gluten sensitivity? I'm still new to all of this and my doctors don't help...my doctors have also freaked me out with other possible autoimmune diag., so this is probably also the root of me wanting to find out a diag. thanks again for everyone's help!!

[Guest nini]

I go back and forth on the issue of to self diagnose or not, and just based on my experience, I self diagnosed (with the help of a friend) about 5 or 6 years before my actual dx. However, after 2 years of my "self dx" I began to doubt myself and even had my OB/GYN tell me that I needed to go off the gluten-free diet because it was "bad for my pregnancy" When I FINALLY got sent to a GI that correctly dx me, I kicked myself for not sticking with the diet for the previous 4 years, BUT I've realized that I needed to have a Dr. tell me definitively what I had because otherwise there would always be some doubt. Now, that being said, I DON'T believe that you should have to go on a gluten challenge and go through the biopsy and such, but you should have other blood tests to RULE OUT the other autoimmune disorders that they are scaring you with.

To me a positive dietary response is an excellent indicator that for whatever reason, you should not be consuming gluten, and in my mind there is no reason to intentionally eat gluten just to have testing done. They can still test you for other autoimmune disorders without you having to be consuming gluten. If gluten makes you ill and miss work, JUST DON'T DO IT!!!

[Lesliean]

I love your answer Judy. You explain so clearly the difference between celiac and gluten sensitive and how we all need to be gluten free.

Enterolab feels you well get an accurate testing up to 2 year gluten free as fecal samples are more sensitive to the tests. One year seems a long time and you might be negative and need to retest on gluten but at least you don't eat gluten for the testing the first time. The gene panel is good for testing of the gluten genes including the new ones that the blood tests don't even test for. My insurance company paid the whole bill and did not require a referral as Dr. Fine is a qualified specialist.

Leslie

[judy05]

Saw,

Is having Celiac a more serious condition than gluten sensitivity? Here again we have to say it all depends.It seems that people who are gluten intolerant get more neurological problems as well as GI problems, I know that because it happened that way with me. It also depends on how long it took to be diagnosed, some of us were sick many years before they lucked out and got answers. Others get diagnosed rather quickly and have symptoms like fatigue and or anemia, they of course probably don't have the damage as the rest of us. Either way we all know the diet is the prescription, gluten-free for life. I have three autoimmune diseases, may be more. Docs just don't get it unless you find one who specializes in it, I was lucky to find a GI who thought I had it but now he's not sure because I don't have the gene. You could try doing the genetic testing, that way you will know for sure, unless it comes back negative I wish that I could help you more, it has to be your call. I'm sure the future will bring us more answers, maybe more genes will be found.

[plantime]

Since you have been glutenfree for a year, you could also try a "self-test" of the food. By that I mean eat a bit of gluten, and see how you react. If it makes you sick, then you will know not to eat it. If it does not make you sick, then you will know to find a doctor that will run more tests. The face swelling and itching part sounds more like an allergy than celiac, but the treatment is the same: total avoidance of gluten.

[Ann]

I am also new and would like a little advice about self diagnosis. I started out with swelling and extreme itching on my face (lips were huge and quite disgusting) that spread eventually to my cheeks and forehead. I had a butterfly effect on my face for a while (nose and cheeks were very irritated) broke out on my shins and forearms too. Rash was oddly symmetrical. family doctor thought lupus, dermatologist thought some kind of immunological disorder, not sure what though. I had many tests ran, all came back ok for lupus but was diagnosed with lymphocytic perivasculitis. I was prescribed some kind of ungodly steroid cream and told to be very careful using it as it has adverse side effects on liver and kidneys and "Oh by the way, it will only take care of the symptoms temporarily and we haven't got a clue as to what is wrong with you". I of course have not and will never use this cream. I will suffer the rash gladly in contrast to dialysis or liver failure thank you very much. All rashes cleared up a year ago except on my forearms. It stays in varying degrees of irritation except when I drink a beer. I mean it is immediate. I want to rip the skin right off. I can drink vodka, whisky, rum and some wines with no problem....I'm not an alcoholic really...I just wanted to run a few tests on my self My reactions are extremely consistant. So I thought wheat must be my problem. I have no gastrointestinal reactions immediately. However my insides have always been a little squirrelly (irritable bowel syndrome/constipation). I cross referenced lymphocytic perivasculitis and celiac disease and came back with dermatitis herpetiformis. If anyone has the patience to read my life story please tell me what you think. I cannot even tell you how desperate I am.

[mommida]

Hi ann,

Getting a diagnoses for Lupus is very difficult. I would get a second opinion from a specialist. Lupus can have such a variety of symptoms, but to have a classic "flare" of the "butterfly" rash should reallybe taken seriously. The gluten free diet would also be helpful for Lupus, because of the multiple food sensitivites connected to it. It took 10 years to get my friend diagnosed with Lupus.

You may have Lupus and Celiac or gluten sensitivity.

The average length of time in the US for Celiac diagnoses is 11 years. Get a great doctor to work with for your diagnoses. You shouldn't have to waste time with a doctor that is so ignorant, to say, "It's all in your head".

As for facial swelling being a symptom, I say yes. When I went on the gluten free diet, the first hing that happened was it appeared that I lost weight. The scale didn't show a difference. My face had been swollen.

Laura

[Saw]

Ann- Your symptoms sound alot like mine... it usually starts at the mouth (burning) and spreads throughout my face (butterfly rash). I definitely feel your pain, doctors are so frustrating! I would leave their offices crying MANY times. They tested me for lupus and multiple other horrible auto-immune diseases, but everything came back ok. Do you have any joint symptoms? stiffness? I notice that if I eat a little gluten I have stiff joints. It's so frustrating! I haven't had a huge reaction since I've been gluten-free. I don't know anything about "lymphocytic perivasculitis", but I'm going to google it and read about it. Sorry, I don't have any answers for you, but you are the first person I have came across with similar symptoms as me.

[turtle99]

Wow, I see myself in so many of you! I recently got my blood test results back, but they said that it's <20 for IgA and IgG , so I do not have celiac disease. But if Entrolab, says there should be nothing as a result for someone who does not have celiac disease , than does that mean that I could have it, even if my numbers are low? The diagnosis thing is confusing for me.

I suffered many years with :

depression, lethargy, fatigue, brain fog, mood swings, weight gain, animal-like hunger, muscle cramps, very dry skin, rashes, low body temp., bloating, diarrea, anxiety, boarder anemia, difficulty concentrating, memory problems.....everything I tried to do was a terrible strain, everyday was just exhausting, and I just no longer wanted to participate in life.

But according to my own observation, I've been off gluten for more than 2weeks and I have a definite difference.

The giantic brain fog and lethagy went away!!! It was so amazing. I did notice also as soon as I eat some with gluten, or sugar, I face would swell up; I mean it reallly altered my features on my face! It 's like having 2 identities!

There is a very distinct reaction to gluten. It is very obvious with me. And from reading stuff here, I realize that just seeing your own results of change, is enough to confirm that gluten does belong in my body. The question is not whether gluten is a problem, it's a question when is medicine going to find a more definite way to identify why is creating so much havoc to our bodies.

[ianm]

If eliminating gluten makes you feel better then don't eat it. It really is that simple. The fatigue and brain fog is a horrible way to live. I did it for 36 years. My life is so different since I stopped eating gluten that a test will only confirm what is already obvious.

[Emme999]

Hello

I just wanted to comment on a couple of things:

Gene Testing -

A couple of weeks ago I went to listen to a gastroenterologist speaking on celiac disease. His take on the genetic testing was that it can only show if you *don't* have celiac disease. He said that two genes tested (HLA-DQ2 & HLA-DQ8) are actually quite common. If you have these genes it doesn't mean that you have celiac disease. People who have celiac disease always have these genes, but sometimes people who don't have celiac disease have these genes also. The only value of genetic testing (from what he said) is that it can rule out celiac disease if you do *not* have the genes (as people without these genes do not develop celiac disease). To me it sounds like a waste of money to get a "maybe"

Difference between Wheat Allergy & Celiac Disease -

There is a HUGE difference between Wheat Allergy and Celiac Disease. In March, I had an ELISA blood test to determine my food allegies (IgG & IgE). It showed No Reaction to: Oats, Barley, and Whole Wheat and only showed a (barely) Low Reaction to Wheat (Gliadin), Wheat (Gluten), Rye, and Spelt. According to this allergy test - I don't have any problem consuming glutenous grains.

But a couple of weeks ago I had IgA & tTG blood tests that were indicative of Celiac and last week I had a biopsy to confirm it.

Here's a quote from Open Original Shared Link

"A common garden-variety "wheat allergy" happens when your body sees wheat as an invader and attacks it -- not your body. Symptoms of wheat allergy could be eczema (different from dermatitis herpetiformis), sneezing, increased acne, or if you have a very serious allergy to wheat, you might have an anaphylactic reaction in which your throat would swell up to the point where you could no longer breath. These are not symptoms typical of celiac disease. The main effect of celiac disease is damage to the small intestine; if you have symptoms that are caused by damage to the small intestine (e.g. flattened villi as seen in a biopsy, or any form of malnutrition that is caused by the damaged villi) then what you have is not a wheat allergy, but celiac disease. In my years dealing with wheat-free diets, I have seen very few people with a simple "wheat allergy" and lots with celiac disease, so I suspect celiac disease is more common than wheat allergies. "

My theory is that wheat/gluten allergies frequently run concurrent with celiac disease - and the patients who have both are the ones who are more frequently suspected of having celiac disease. The indicator for me was that I have osteoporosis (at 32). I don't have any immediate reactions (besides some depression/anxiety) to gluten. I would never have been diagnosed without that bone density test!

Okay... talking too much... Sorry!

- Michelle

[turtle99]

Hi Bean,

Talk too much? NO way, it's very educational and l appreciate you sharing your knowlegde. I'm still so new with this, trying to understand. And actually I was wondering the difference between allergy and celiac disease, just as I was reading your post. Now I suspect that I do have celiac disease, because I found that I was really not absorbing nutrients well and I always had a huge issue with digestion.

Do you think I should get a bone denisty test also? Because I'm in my 30's and I just found out about this gluten intolerance now.

Ianm,

I agree that the choice is very simple and I'm not going to let the temptation of common foods, ruin my health. I'm just so surprised that I found a place that understands the 'brain fog' experience, and all the other complaints of gluten-invasion! Now I'm seeing things so differently for the first time.

[KaitiUSA]

Turtle-

I am 17 and they had me get a bone density test to make sure the celiac didn't cause any other problems.Thankfully, the bone density test I had showed my growth is normal. I think it definitely is a good idea even if it is just to rule that out because one of the things that can come from untreated celiac is osteoporosis so it would be better to find out now. Are you taking calcium?

[lotusgem]

Well, I was a bit slow picking up on this thread, but it was interesting reading. I am self-diagnosed, and have been gluten-free for almost a year. I had so very many of the classic indicators and have had an extremely positive dietary response. Doctors were absolutely useless to me, and don't feel a need to get an "official" diagnosis. I also had itching on my face, around the corners of my mouth, but don't any more. Ann, you're the first person that I've seen mention beer consumption and itchy skin. I figured out 20 years ago that when I drank beer, I'd have an eczema flare up the next day, with incredible itching. Saw a post recently that stated that there is seldom any mention of the connection between eczema and Celiac, though there is one. Last year, before I found out about Celiac, I had a bone density scan through a seminar at my job. I couldn't understand why my results were inferior to my co-worker's who is ten years my senior, and almost 60 years old. But I've had this condition my whole life, and you guys who are younger are so lucky to be figuring this out early before the damage is done. I say, if you are healthier without gluten, then that's all you need to know.

[Emme999]

Turtle,

The bone density test (Dexascan) is probably a good idea. The only problem is that is is really expensive ($250) and your insurance might not cover it. If it *will* cover it - definitely do it and find out what is going on with your bones.

The good news is that I've read reports saying that after 1 year on a gluten-free diet, bone density increases up to 15%. That's huge. Yay!

Keep in mind that you need to take *absorbable* forms of calcium! I highly recommend Calcium Citrate - it's easily absorbed by the body (something especially important for those of us with celiac disease) and not too expensive. Whatever you do, don't take Calcium Carbonate - which is found in products like tums - it reduces the acidity of your stomach and calcium *needs* an acidic environment to be absorbed.

Also - take enough. I had been taking the suggested 1000 mg/day and the doctors suggested I increase that to 1500 mg/day. And it's also incredibly important to have the other nutrients that aid calcium absorption (Magnesium, Vitamin D, Zinc, Copper, Manganese, Boron).

Hold on - let me go find you some info I'll post again soon!

- Michelle

Good luck!

- Michelle

[Emme999]

(This is going to be long!)

Here's some info on osteoporosis from "Dangerous Grains" (by James Braly & Ron Hoggan):

"A related paradox of osteoporosis and celiac disease is that calcium supplementation does not help to remineralize celiac patients' bones as much as magnesium supplementation. There is comparatively much less magnesium in our bones, so this information provides an important clue to the fascinating puzzle of the impact that gluten can have on bone density.

Not only is magnesium important to the activation of bone-building osteoblasts that deposit calcium and add collagen to our bones but it is also a factor that aids in repairing the parathyroid gland. This is a gland that produces the hormones (PTH) that regulate most of the body's calcium metabolism. These hormones signal the kidneys to recover calcium from the urine, to elevate blood levels of calcium, and to activate vitamin D, which signals the intestine to absorb calcium from the food we eat. Clearly, adequate dietary calcium is of little value if we are not getting enough magnesium for the parathyroid gland to function properly.

For these reasons, dairy products and calcium supplementation may actually have a negative impact on the density of our bones, exactly the opposite of what we were taught to expect. It also counters the simplistic advice to consume calcium supplements alone and/or dairy products that are often offered to many individuals with declining bone density. Magnesium, calcium, zinc, boron, and vitamins D and K, all reported to be deficient in many celiacs, are absorbed from the intestine by the same mechanism, called "active transport." Loading the digestive tract with calcium alone overwhelmingly invites this part of our absorptive capacity with a single mineral, albeit the most common one in the body. This approach is shortsighted and, quite frankly, harmful. It risks causing a deficiency in magnesium and other necessary minerals, which are less abundant and frequently deficient in our diets. Magnesium and phosphorus deficiencies caused by excessive calcium intake may paose a much greater risk of causing bone mineral loss. Further, the risk is largely independent of the traditional suspect in gluten-induced bone damage - malabsorption. The key issue is the balance of relative quantities in which these minerals are available, either in our diets and/or the supplements we consume."

Hope that helps!

- Michelle