Are These Celiac Symptoms?

[djs895]

During the past few years, I have noticed that the more regularly I eat wheat, the poorer my health and brain function. At times, after eating wheat, I get dizzy and can't hold my balance, and my thoughts become an incoherent blur. There have been times when my head felt so heavy I just had to lay on the ground and couldn't talk or respond to someone asking me what was wrong.

The most common symptoms after consuming wheat or gluten is that my head feels foggy, I cannot concentrate, feel irritable, headache, bloodshot eyes, confused, sore or dry throat, and acne. Most of all, wheat makes me very tired.

I've also been dealing with persistent tooth cavities and weakened enamel, and I wonder if this is related to my consumption of wheat over the years. When I was younger the staple of my diet was wheat every day, and I believe I was experiencing the same symptoms back then, but to a lesser degree. I never thought to correlate the two until I read about celiac disease/gluten intolerance. I still feel heavily addicted to wheat, despite the consequences that come from eating it.

I was blood tested for celiac disease, and was told the test showed negative. Based on my symptoms, how likely is it that the test was wrong? Or could these symptoms stem from something else?

[kittty]

I'm not an expert, but wanted to give my two cents. I've never been officially diagnosed with celiacs, but cutting gluten out of my life was the only thing that solved all of my varied health problems. I don't think there is any benefit to being officially diagnosed - if cutting out gluten solves your problem, then you have an answer. That was good enough for me. From reading on these forums, it sounds like lots of people have negative blood tests but are clearly suffering with celiacs. Give up gluten for a while and see what happens

Some of your symptoms sounds similar to mine, and some don't, but that is normal. I think it affects different people in different ways (I'd love to know why).

One thing you mentioned was really interesting. I haven't even thought about it until now, but since going gluten-free my acne is completely gone. I haven't had a zit in months!

[djs895]

Thanks for your response. I would not be surprised if many other people get acne from wheat, because the rise in blood sugar increases insulin, which can lead to inflammation. When I limit my intake, my skin clears up quickly.

[Mom of Boys]

Thanks for your response. I would not be surprised if many other people get acne from wheat, because the rise in blood sugar increases insulin, which can lead to inflammation. When I limit my intake, my skin clears up quickly.

djs, go get some potatoes, rice, beans, your favorite vegetables, meats, and eggs. Stop eating gluten. If your symptoms go away, it was gluten. If they don't, it's something else and you at least gave it a try.

there's no benefit that I know of to getting a formal diagnosis. In fact, getting diagnosed properly requires that you continue to eat the very foods that are making you sick. Eat the gluten-free foods, get healthy, then tell a GOOD doctor what happened. They can give your the diagnosis based on your track record.

Best thing I ever did for my body was admit I have gluten intolerance.

[squirmingitch]

djs, many times when ppl think they have had the blood test for celiac disease & it turned up negative it's b/c they were NOT given the full celiac panel. Why? Because most doctors don't even know what the full panel consists of & sometimes they even read what they did wrong. Also, if you had been gluten light it could have skewed the test. AND finally, there is a high rate of false negatives.

Having said all that --- if you get a copy of your tests from your doctor & post the results along with the ref. ranges (b/c every lab ref. range is diff.) then there are those on here who are very good at reading those tests & can tell you if you even had the correct tests.

BUT even if that turns out to be the case then good luck getting the doc to retest you. Doctors DO NOT like to admit they were wrong & re-testing you is just that.

So, in conclusion, I have taken a long winded way of saying what the others said --- give gluten-free a good strict trial for 6 months & see how you feel.

Yes, your symptoms are in line with celiac or a gluten intolerance. You may not have any GI issues but not everyone reacts the same way --- we ARE all individuals.

[Adalaide]

I had blood tests and a biopsy on the same day. The blood tests came back negative but the biopsy was positive. Because I had not eaten for about 48 hours before the tests I asked to have the blood tests redone. They were negative again. After a few days I finally just accepted that the biopsy is what it is and went gluten free.

So unless you are stubborn as a mule and need to be beaten over the head with a diagnosis (like me) you can probably just skip ahead to the gluten free diet and get to feeling better. If though, you feel like you absolutely need that paper, get the biopsy now. It is better to wait to get started for a few weeks while you wait for a test than it is to get started, get feeling better than to whammy yourself with gluten again. If you go this route make sure (and double sure) you have a doctor who knows what they are doing who takes the full range of samples for the biopsy. There is no point torturing yourself for a moron.

For me one of the scariest symptoms was the fog. It was something I never admitted to anyone because I didn't want to seem crazy. I felt like I was living my whole life just a little bit out of sync with the world, like it was all surreal. And I was scared that if I told someone I'd end up in a loony bin in a white coat hugging myself for the rest of my life.

[rosetapper23]

I would like to add that perhaps what you have is not really acne; that it is, in fact, Dermatitis Herpetiformis (DH), a blistering, itchy rash that some celiacs have. Oftentimes when it's found in places common for acne, the patient and/or doctor assumes that it is simply a bad case of acne. If you DO have DH, then you have celiac....and celiacs with DH are notorious for failing the blood tests. If you would like a diagnosis, you can try to find a dermatologist who has experience biopsying DH (good luck there!). If the biopsy is positive for DH, then you have celiac....and no more testing is necessary. If you decide to go the dermatologist route, make sure that he/she biopsies the CLEAR skin next to a lesion; otherwise, if he/she biopsies the lesion itself, it will test negative.

[kittty]

For me one of the scariest symptoms was the fog. It was something I never admitted to anyone because I didn't want to seem crazy. I felt like I was living my whole life just a little bit out of sync with the world, like it was all surreal. And I was scared that if I told someone I'd end up in a loony bin in a white coat hugging myself for the rest of my life.

Oh that sounds so familiar! My problem was that people started to think I was stupid, add to that all the time at work I missed and people thought I was stupid AND lazy. No one wanted to hear "I'm sick, but no doctor can find what's wrong with me. Can I have another day off?" Where I work if you miss more than three days due to illness a doctors note is required. So I'd feel awful, go see a doctor, and they would tell me it's all in my head. That made me think for a long time that I WAS stupid and lazy. The guilt was horrible.

[djs895]

Well, it's been about two weeks gluten free, and I don't feel any better. I've noticed I get the same reaction after eating rice foods. I bought rice cereal and pasta, and after eating those, I experience the same symptoms as with wheat.

Perhaps my problem is not with just wheat, but any food with a high glycemic index.

Right now I have a heavy pressure in my head and could barely stay awake or focus at all today. I hate knowing that I'm very sick, but feeling so bad that I can barely focus or read on the internet about what kind of different diseases could be causing this.

[GottaSki]

Welcome!

Not everyone has improvement right away...it can depend on the damage to your digestive system. Don't give up...you really need to give it at least three months...it is likely that you will see some changes in your symptoms soon. Acne whether or not it is DH can take some time to improve from dietary changes.

Are you certain you have removed all gluten from your diet and kitchen? Gluten is wheat, barley and rye. Was the rice cereal gluten-free (many cereals have barley malt). Gluten can hide in seasonings, sauces - nearly all processed foods. It is tough to truly get all gluten out in the first weeks. Eating whole foods that you prepare yourself is the best way to start.

This link may help:

https://www.celiac.com/celiac-disease/the-gluten-free-diet-101-a-beginners-guide-to-going-gluten-free-r1640/

Hang in there