Pissed Off

[tschooner07]

So I have a problem that I'm dealing with... I've been a sick person for years now. Since I was 12 years old, I have had health problems. I have been aenemic since I was 13, and I have tried iron pills, and iron shots. They never really helped much in boosting my iron levels. I have always had a hard time focusing in school because I felt like my brain was all foggy. I thought this was just because I had aenemia. I also have been experiencing stomach problems. I have had really bad menstrual cramps since I was 12. I'd have bad cramps and lower back problems 3 weeks out of every month. And I have had problems with my bowels since around that same time too. The doctors would do testing every time I got bad cramps, and wouldn't tell me what kinds of testing they did. I have ended up in the hospital at least once a year due to bad abdominal cramps. And every time they just said it was my bowels. About 3 years ago, I got fed up with the testing that went on every week, and not getting any information from the doctors. So I demanded that I see a specialist. 5-6 months later I finally got to see a gynecologist. She did a laparoscopy on me to see if I had endometriosis(a gyno problem in which menstrual blood travels outside of your uterus), and then she couldn't find anything wrong with me. At the same time I had an IUD inserted to try lower the menstrual blood, therefore stopping the cramps. That didn't work. I told her that I was still experiencing pain. She told me it must all be in my head cause nothing was wrong with me. So I told her that SOMETHING must be wrong with my body cause it can't just be in my head. Then I demanded to get another referral to see a different specialist. She consented and I got a referral to see a pelvic pain specialist. This lady was more understanding, and helpful in helping with pain management. But the pain didn't go away. At this point, its 2012, and I have already seen this doctor twice. And I have had to withdraw from university courses for one term because the pain had been unbearable. Finally this year, my boyfriend of a year had suggested that I might be allergic to gluten. One of his friends is Celiac, and he has had to room with him for a job out of town. My boyfriend then seen all the same symptoms in his friend that he always seen in me, and said that I got to stop eating gluten cause its killing my body. I went to see my doctor about this, after I had gone gluten free for over a week, and told her that I might be allergic to gluten and I'd like to find out. She told me I had to go back to eating gluten for a week before getting blood tests. I did, and I felt horrible. I ate one bagel, and my body started reacting to anything else I'd eat. It would hurt any time I ate or drank anything. After a week long glutening, I got the blood tests done, and the doctor said that I'm not celiac, but "gluten sensitive". I don't know if there is anyone else in the same boat as me. But I'm pretty sure I'm allergic to gluten because even just a small particle of gluten contaminating my food gets me sick for days. My boyfriend has gone on a gluten free diet because he doesn't like to see me get sick. But as much as I try to tell my doctor that I'm allergic she still says "sensitive". She seems to think that in time, my body won't be so sensitive to gluten.... But I must tell you guys that I'm native. My boyfriend's friend said that native people have different antibodies that they make towards gluten, and that's why the doctors can't say I'm Celiac.

[kareng]

I'm not sure what you mean by " native" but the antibodies for celiac are the same. If it were me, I would request copies of the Cleiac blood panel and see what they tested, if they really did the correct tests.

[tschooner07]

I'm not sure what you mean by " native" but the antibodies for celiac are the same. If it were me, I would request copies of the Cleiac blood panel and see what they tested, if they really did the correct tests.

 

Ok, thanks. I will do that sometime. I'm just nervous to see if they didn't do the right tests because I dont want to go back to eating gluten because not only does my whole body ache, and i get brain fog, but i also get really depressed and moody. 

[NoGlutenCooties]

It sounds like you could have Non-Celiac Gluten Intolerance.  It's all the same symptoms as Celiac, but without the damage to the villi.  But I agree that you should get a copy of your bloodtest results to see what tests they ran and what the actual numbers are.

[bartfull]

Your most likely are NOT allergic to gluten, You are INTOLERANT to it. An allergic reaction usually involves breathing. An intolerance, sensitivity, or out an out celiac involves your digestions (and a WHOLE lot of other symptoms). Some of us either don't have major digestive symptoms, or we do along with skin rashes, brain fog, fatigue, headaches, and the list goes on and on.

 

When you say you are native, do you mean Native American? I am part Lakota, but I get my celiac disease from my Mom's (German) side.

 

Anyway, it sounds to me like you might well have either celiac, or what they call non-celiac gluten intolerance. The symptoms are the same for both although they claim that celiac is the only one that causes actual damage to your small intestine. Either way, a gluten-free diet is the only way to put those symptoms to an end.

[GFinDC]

Hi,

 

Celiac disease is not an allergy.  It is an auto-immune disease.  So if the doctor tested you for allergies, that don't worky.  I agree with Karen, you need to get copies of the tests and the normal ranges for the results.  The ranges vary by the lab that does the testing.

 

The other test they do for celiac disease is an endoscopy of the upper small intestine.  They can take small biopsy samples of the villi (intestinal lining) and check them for damage under a microscope.  Unfortunately, celiac disease testing it not perfect, so it is possible to get a negative result and still have celiac disease.  Another possibility is NCGI (non-celiac gluten intolerance).  NCGI has the same symptoms as celiac disease, but there are no standard tests for it right now.  With either condition the treatment is the same.  A lifelong gluten-free diet, 100%.  Getting pissed off is not unusual I don't think.  Sometimes it takes many years for people to be diagnosed with celiac disease.

[StephanieL]

Bartfull, an allergy is a typically immediacy to 2 hour after ingestion issue mediated by IgE immunoglobulin. It DOES NOT have to be breathing that is hindered to be an allergy. There are many other signs of an IgE allergy like hives, swelling, GI issues and possibly breathing. A lot of people assume it's just breathing but it's really more than that.

You can be allergic to wheat but gluten is usually a sensitivity if it's not Celiac disease.

[deb445]

 

Sorry to hear your pain.

 

In my experience, eliminating grain and eating wild game and grass fed animals has been an important part of my healing. I wonder how our overall health would change if we more frequently ate from the land again  - not the processed aisles of the mega box grocery stores?

[WestCoastGirl]

I am so sorry. Most doctors just don't "get it." It's the whole cultural "but wheat is such a wonderful, happy, benign food that there must be practically no celiacs in existence!" thing. (If they even read a paragraph on celiac in med school. I've heard from med professionals that their nutritional unit is extremely short, like, a page short. Don't know if that's an exaggeration.) Docs really need to wise up!

 

I am so very sorry and I hope you feel better soon.

[WestCoastGirl]

Also...as to the possibility that you're native (do you mean Native American?), I don't think that's probably the reason you have a sensitivity to gluten. I know plenty and then some of Euro- and other-descent people who have NCGI or celiac disease.

[tschooner07]

I get a whole bunch of reactions to gluten when its ingested: i get really bad dry skin issues. i've had excema since i was a baby. but with cutting gluten out of my diet, its starting to clear up. now, my excema just flairs up when i get glutened. i used to get really bad diarrhea within half an hour of eating something like pizza/bagel/bread/oatmeal. now, when i get glutened,  i have get a sore itchy throat, and  start throwing up. I get brain fog, fatigue. my stomach gets really sore, my lower back is really sore.  i get really bad constipation. my muscles start aching, my joints get really sore. And i get really depressed. I'm pretty much sick for almost a week when I get glutened. 

Just this week, i started avoiding processed foods because I have missed so many classes at university due to getting glutened so often. 

I found out from one of my boyfriend's friends that if i eat any processed foods, to make sure its Certified Gluten Free. And, its also best to eat Gluten Free foods from the States, because Canadian standards for gluten free aren't as good. 

I've only been eating ancient grains such as Quinoa Rice. Its been something that I've been eating if I don't feel like eating meat. My doctor told me that if I feel I can't eat any meat right now, just to eat what I can while my body is still healing from all the times i've been glutened. Right now, I've been just listening to what my body wants, which has been Quinoa Rice and veggies. 

[psawyer]

I found out from one of my boyfriend's friends that if i eat any processed foods, to make sure its Certified Gluten Free. And, its also best to eat Gluten Free foods from the States, because Canadian standards for gluten free aren't as good.

I don't know where this is coming from. In the US, there is a standard being phased in regarding gluten-free labels. But Canada has had one for years. It was updated effective August 4, 2012.

Here is the applicable Canadian regulation. It applies to all food sold in Canada, regardless of where it comes from.

Food and Drug Regulation B.24.018

It is prohibited to label, package, sell or advertise a food in a manner likely to create an impression that it is a gluten-free food if the food contains any gluten protein or modified gluten protein, including any gluten protein fraction, referred to in the definition "gluten" in subsection B.01.010.1(1).

Subsection B.01.010.1(1) reads:

"gluten"

(a) any gluten protein from the grain of any of the following cereals or the grain of a hybridized strain created from at least one of the following cereals:

(i) barley,

(ii) oats,

(iii) rye,

(iv) triticale, or

(v) wheat, kamut or spelt; or

(b) any modified gluten protein, including any gluten protein fraction, that is derived from the grain of any of the cereals referred to in subparagraphs (a)(i) to (v) or the grain of a hybridized strain referred to in paragraph (a). (gluten)

In Canada, the gluten grains are "priority allergens" and must be clearly disclosed on the label of a food containng them.

Open Original Shared Link.

[CK1901]

Are gliadin levels included in the celiac panel? I know when I was diagnosed I had very high gliadin levels, but I vaguely my practitioner also telling me that my celiac panel was negative. I had to be very forceful in convincing my gastro to do an endoscopy on me (at which point I was diagnosed correctly.)