Gluten Symptoms

[Engineer2]

I've been on a gluten-free diet for 2 years now. I orginally started because my baby daughter had severe colic and I eliminated gluten from my diet to see if it helped her colic. (It did! She's severly allergic to gluten.) I found out as a side-benefit that I also felt great off of gluten and many nagging health problems seemed to start to heal.

Here are the full list of symptoms that I get from eating Gluten:

- Arthritis in Neck, Back, Hands, Knees, and severe foot pain. (I'm not even 40 yet!)

- Chronic Depression

- Anxiety

- Insomnia/trouble falling asleep

- Vivid dreams/nightmares that I could remember in exact detail

- Waking up during Sleep paralysis

- Pressure and tingling on one side of my head

- Hair loss

- Small bright red dots/rash all over my upper arms

- Severe Heartburn

- Fatigue

- Mental Fogginess

- Difficulty Concentrating

- Diarrhea

- Very overactive bladder (would often have to get up 6 times a night to use the bathroom.)

- Dizziness when I stood up

- Spots before my eyes sometimes

- Adult acne

- Itchy scalp

- Circles under my eyes

- Swelling/bloating in my hands, feet, and stomach

- Randam stabbing pains in my stomach area

- Weight gain

- Overwhelming cravings for certain foods (worse than pregnancy cravings!)

- Sensitivity to Caffeine

- Oversupply of breastmilk while nursing my baby.

How do I know all these seemingly unrelated symptoms are caused by gluten?... because they go away completely when I'm on a gluten-free diet. Some of the symptoms I've been dealing with my whole life and some started to show up in my late 20s. As you would guess from my list of symptoms, I have a lot of motivation to follow the gluten-free diet because all those symptoms come storming back if I accidently eat some. There is no way that I'm going to eat gluten to get tested!

But other than that how can I get properly diagnosed or should I even bother? I've read about all the tests out there for gluten intolerance and celiac and it's all so confusing. I think the main reason for getting some diagnosis is to try to get my extended family (so many of whom have similar symptoms to mine) to take the possibility seriously and go get tested themselves. But seems like doctors are mostly using the blood tests these days and my gluten-free diet will effect that.

What benefit is there to being tested? What testing should people already on a gluten-free diet do?

Thanks,

Paula

[floridanative]

Hi Paula,

Looks like our experts haven't posted to your inquiry yet. Most of them know more about Celiac than most doctors do. Anyway, from reading their prior posts about testing, I understand that you have to be eating gluten to test with blood work or the biopsy. But eating a gluten-free diet is also a valid test to show if you are affected negatively by it or not.

More experienced members will get back to you soon I'm sure. Good luck to you.

Tiffany M.

[KaitiUSA]

Well personally I would not bother. In order to get tested accurately you would need to get back eating gluten for at least 3 months eating equal to 2-3 pieces of bread a day. You can not get tested accurately as of now because you have been gluten free.

You obviously have a problem with gluten and whether you are celiac or just gluten intolerant you will have to follow the diet. I would go with what your body is telling you. Your body will tell you all you need to know.

[Nevadan]

I agree with Kaiti's recommendation. I was in a similar situation. After self-dianosing with diet, I did get tested by Enterolab ( Open Original Shared Link ) mainly to get their DNA results (you can do the DNA test only for about $150) since I believe the DNA testing does give you an idea of what you are susceptible to (but it doesn't prove you have anything). You might want to try that.

I found I don't have the genes to be likely to have celiac disease; however, I have a double copy of the DQ1 gene for gluten intolerance which probably explains my positive reaction to a gluten-free diet.

George

[taweavmo3]

Personally, I wouldn't bother with the testing. You obviously feel better on the diet and you know you have a problem with gluten. I am in a similar situation....my daughter has celiac disease, and I went on the diet with her just to see how I felt. I found out that I felt amazingly better on the diet. So many things improved that I never even realized were a problem. I sleep much better too, I used to toss and turn all night long. My migraines have all but dissapeared too. They were horrible for the first few weeks on the diet, it felt like I was going through withdrawl. Anyway, I won't ever go back to a regular diet, it's just not worth it.

This is just my opinion, but I wouldn't put yourself through the hell of a gluten challenge just to get your family to take it more seriously. We have a + dx with my daughter, and that still hasn't persuaded my family members with symptoms to get tested. It all boils down to whether or not they want to take control of their health, and all you can do it tell them what might help, and leave the rest up to them. Some people just aren't willing to change their diet, no matter how sick they are. As frustrating as it is to watch, there isn't much else you can do. All you can do is keep yourself healthy.

[Engineer2]

Thanks all for your support and replies. I did break down and make an appt with the doctor. The past few days I've been feeling pretty awful which doesn't seem due to gluten exposure. Also as I've been thinking about the past few years, I've realized that the gluten-free diet has helped a lot but overall I feel like my health is sliding downhill again (even though I am more and more careful and committed to a total gluten-free diet.) I've noticed that too with my daughter... she's better than she would be on a gluten diet but I still have some health concerns about her and she still is sick on days when we know she couldn't have been exposed to gluten beforehand. So I also made a pediatrician appointment for her.

Someone made an earlier post about being diagnosed for Celiac and Fibromyalgia. I took a look in the bookstore at several books on it and was shocked to find that I have EVERY single Fibromyalgia symptom that they list! This is the first I've ever heard about this health issue. I never really bothered to tell my doctors about most of my symptoms because they seemed like such weird symptoms... and the doctors didn't even seem to take my less-odd symptoms seriously.

I've done a lot of research into my families health and my health but it's obvious that it's time to get some allergy, gene, and blood tests because how can I ensure we are all on the proper diet if I don't really know for sure what the heck is wrong with us?! And although there are some similarities... the diets for IBS, Crohns, Celiac, and Fibromyalgia all have many opposite lists of "good" foods and "bad" foods... which is really fustrating so I've just got to narrow down what allergy, intolerance, or disease I really have so that I can try to eat right for recoverying my health.

Thanks!

Paula