Posts: 4,541
11/23/11 6:01 P

Welcome! Unless you really want to have a diagnosis, I don't think it is. I gluten-loaded one day for a blood test and that was bad enough! I never got the biopsy because the earliest GI appt. I could get was 30 days later. The blood was positive but I already knew what I had just by doing the research. If you feel better, then there is your answer, really. BTW a lot of us can't handle dairy either, due to either lactose or Casein.

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Posts: 7
11/23/11 11:48 A

Hi there! I'm fairly new to the gluten-free lifestyle. I've had stomach problems since I was a kid, and I could never really figure out what the problem was. I've been off dairy for about 4 years now, and was still having lots of digestive issues. My chiropractor actually suggested I try a gluten-free diet, thinking I might have a sensitivity. I've never been formally tested, but I've never felt better than when I don't eat gluten for weeks at a time. Of course there's the occasional slip-up, but I can definitely tell afterwards...usually for days. I don't know that getting tested is necessarily worth it if it means you need to eat gluten for the tests to work. I'm just going by how my body feels, and that seems to be working for me! :)
I've been gluten-free for only 4 months now, so any advice would be helpful!

Also: I'm new to SparkPeople, so any general advice would be great too!!

Edited by: POPPYBLOSSOMS at: 11/23/2011 (11:49)

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8/27/11 4:43 P

I really appreciate this. I am going to keep a detailed food journal as to what my reactions are and I just read that itching all over the body is a determinant of a corn allergy because histamine is spread all through out the blood stream. Thank you so much for the advice I will definitely take it and I contacted my gastroenterologist to see if it was gluten or corn. I hope she has me take an allergy test. It may be difficult to tell which it is because stomach problems can come along with a corn allergy too as well as nausea and vomiting. Thank you everyone for having a place for me to vent and get some questions answered.

Hannah

Posts: 7,085
8/27/11 4:24 P

My corn allergy is pretty evident (sore throat almost immediately after injesting it, and even had a reaction to corn oil in lipstick. - I check everything more carefully now.). I would suggest avoiding all corn for a few weeks and then reintroducing it to see if there is a reaction. Keep a journal that lists all the reactions you have suspected so far and your feelings as you avoid and then reintroduce it. - Your own mini-mystery. I hope you feel better soon!

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8/27/11 3:40 P

I'm trying to determine if I have a corn allergy. I have a lot of the non traditional symptoms, it's a little bit like celiac with the stomach problems, I feel tired after I eat, I have dark circles under my eyes, and I am having a totally new symptom which is being itchy and sore all over. Has anybody experienced anything like this? Can anyone help me? Thank you in advance. I also hope everyone on here has all the help they need in their search for answers and guidance.

Hannah

Posts: 4,541
8/18/11 10:29 P

Yeah it usually takes a number of days to recover, even a week sometimes if it is a lot. If you continue GF, you will notice continuing improvements the longer you are off and have no accidental ingestion.

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Posts: 170
8/18/11 11:25 A

I've noticed that I don't have to take my GERD medicine, and my emergency bathroom runs have not occurred since I went off gluten.

Some gluten free (I thought) hoisin sauce I used on Sunday must have had gluten because I felt horrible for 3 days and then today I feel great again. My aunt has the 3 day horrible then fine thing whenever she accidentally has gluten or any other food she is sensitive or intolerant.

I cannot believe how much better I feel since I quit eating gluten!

Posts: 5,504
8/18/11 11:18 A

Welcome to the team Christine!

I've only been gluten free since January. I've had major stomach problems for many years, had been on two stomach medications taking double the recommended daily dosage prescribed by my G.I. doctor. I found a nutritionist that did food allergy testing. I'm don't have celiac but am very much gluten intolerant!

She told me the blood test wasn't very accurate. She had me do a stool test which came back positive. Since then, I've been working with a holistic doctor who also re-confirmed my gluten intolerance using a different stool test and it also tested other things. You don't have to be eating gluten for these tests to confirm you have celiac or gluten intolerance. But as others have said, if you stay off gluten and feel better in a few weeks, that should let you know.

BTW, I'm off all the stomach medicines I had been taking.

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Posts: 147
8/18/11 10:40 A

When I went to the doctor who really tried to help me get to the bottom of all my symptoms, he sent me back to my regular doctor for a food allergy blood panel. He said that it should be the first step in sorting out all these symptoms - it's cheap and only requires a blood draw. Of course, if it comes back negative for all the likely food allergens, you still have detective work to do. Similarly, there is a blood test that can indicate if you have Celiac, although it's not foolproof (do this one before dropping gluten!). If it comes back positive, you have your answer. If it's negative, time for more detective work.

Posts: 170
8/18/11 1:27 A

I'm amazed that gluten intolerance can cause all these seemingly unrelated problems.

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8/18/11 1:16 A

Hi Christine and welcome to this group. I have been gluten free for 2 yrs and definitely feel better. I am not sure if I am Celiac or gluten intolerant as when I got tested I was gluten-free. I was not going to back eating gluten to see what I have. It certainly was not worth getting sick over.
I am glad that you are going gf and if you need any help, you know you can come here and talk to us and we will be more than happy to be there for you.

When I read the last part of your post, you also mention that your arms and legs woke you up twitching. I also have rls (restless leg syndrome) and you sound like you have PLMD Periodic Limb Movement Disorder which is in the rls family. These are also symptoms of Celiac Disease.

I found this out by going onto the Celiac website and it stated all of the symptoms.

Char

Edited by: CTRAVEL at: 8/18/2011 (01:18)

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Posts: 30,234
8/18/11 12:30 A

When you go off grains and most of the symptoms go away then you have your answer

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Posts: 4,541
8/17/11 10:48 P

Try the GF diet and see for yourself. You should know that if you want a formal diagnosis you will have to be eating gluten for the tests. It gets much harder to do after you have been off for a while. Have you asked for the testing? I personally think it doesn't really matter, there is no other treatment than the GF diet but there are things to be monitored via blood work and testing like bone density and vitamin levels.

current weight: 192.0

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Posts: 7,085
8/17/11 7:35 P

It is definitely worth trying to go gluten free. From all the symptoms you describe, I would guess that you are not absorbing the nutrients that you are eating.

Posts: 170
8/17/11 5:57 P

I watched Sick Fat and Nearly Dead on Netflix two weeks ago and I decided to try juicing because frankly I felt like was 80 and ready for a wheelchair. I was in so much pain, stiffness, running to the bathroom, always sick, etc.

I have been tired and not feeling well for years. But last summer I could still walk over a mile. Now I'm happy to get to the car. I'm severely lactose intolerant but I'd get sick sometimes even when I hadn't had milk. I was diagnosed with low vitamin D last summer. I started feeling worse a few months ago and it has gradually gotten to where I'm in horrible pain all over in the morning, stiff, hard to walk, dead to the world like a zombie. The pain and stiffness would get better after 1 or 2 hours. I could go to work, sit all day, go home and lay down. I'm 41!

I finally went to the doctor last week and my sed rate is elevated to 39. He is not concerned but suggested a sleep study due to my not getting asleep/staying asleep and feeling like hell. I have 2 aunts and 1 cousin that are off gluten due to sensitivities. So I started juicing and in just 3 days I have more energy, I sleep better, the pain and stiffness are nearly non existent. However today I feel like the gravity has been tripled. I'm wondering if I accidentally got gluten on Sunday in the hoisin sauce I used that I thought was gluten free.

Could I have celiac disease? Did any of you have elevated sed rates and similar symptoms? I looked up celiac disease and these are all symptoms I have: Abdominal pain, bloating, gas, or indigestion, Constipation, Decreased appetite, Diarrhea off and on, Lactose intolerance,
Nausea sometimes, Stools that float, are foul smelling, Unexplained weight loss (only 5 pounds the last few months), Bruising easily,
Depression or anxiety, Fatigue, Hair loss, Itchy skin, Missed menstrual periods (except very heavy the last 2 months), Mouth ulcers (comes and goes), Muscle cramps and joint pain. I also have memory issues, muscle twitching, blurry vision.. It's been a joke that I have the memory of a goldfish (about 2 seconds), my legs and arms twitch and wake me up from sleeping, blurred vision off and on.


Thyroid and rheumatoid markers/tests, FSH, LSH tests are normal.

Since my doctor is not concerned and thinks nothing is wrong, I'm trying to diagnose myself!

Christine