Celiac Disease, Wheat Allergy, or Wheat Intolerance?

[KingsLily]

For over a year, I have had nearly every symptom of Celiac Disease (CD). Two months ago, I got tested for CD but the tests showed that I did not have it. It did show, however, that I have a very great vitamin D deficiency. I used to be anemic as well, but doctors told me I grew out of it. Do these things have any relevance?

During Lent, I fasted from wheat products (not all gluten-containing foods, however). I felt SO good. I could run without being as short of breath, I was mentally clear, all rashes were gone, I was "regular," and was happy and full of energy. Shortly after, I got tested for CD. Doctors say this fast threw off the test results. They diagnosed me as "undiagnosable," prescribed a large dosage of vitamin D, and advised me to play around with eating and not eating gluten and wheat products.

I still have every symptom of Celiac. Some of these symptoms occur almost immediately after I consume anything with gluten (wheat products like breads and gluten products like cream-based soups). These immediate symptoms include diarrhea, flatulence, fatigue (falling asleep for hours), and vomiting (if I eat foods like lasagna, spaghetti, or anything made with canned soup). If I have gone gluten-free for a week or more and eat something with gluten, I will get a very bad [and itchy] rash on my stomach and bottom. Sometimes, I will even get short of breath. There are, however, more lasting symptoms.

There are some symptoms that linger as well. These symptoms include irritability, mental confusion/fogginess, depression, and abdominal pain. In addition, something in my abdomen spasms when it is touched. It is very uncomfortable. If my abdomen is pressed on, it is painful (scale=6 out of 10).  

I am still eating gluten/wheat products because I want to have further tests done. But from what I've shared, do you think I have full blown Celiac Disease, gluten intolerance, gluten allergy, wheat intolerance, or wheat allergy? All, I have read, are very different.

I just want to be healthy! I am rather tired of this mess! I just want to be healthy.

[PutterGirl]

If you don't feel well eating it, then cut it out of your diet..  don't wait.. if you are testing wrong.. then gluten, wheat is a poisen to your body every time you ingest it..  It is not like other allergies, just because you are not anaphylactic (sp?) it can still kill you.  Just does it slower.  

[happy2Bgreen]

See if a low histamine diet will help.  Any canned products, esp tomatoes send me into a shocky confused state.  My bp goes up and then crashes, I am dizzy, feel like something heavy is on my chest, can't get enough air, night sweats, get cold/pale extremities.  If you want you can try benadryl when this occurs and see if it helps.

[goldilou]

My littlest sister has recently had a very similar situation to yours. She never had very standard allergic reactions but she was constantly irritable, would sleep away entire days, always sore and aching, with constant headaches. The doctors ran very similar test on her and found that she too and extremely low vitamin D. The doctors put her on a strict vitamin regimen to increase her vitamin D. When they re-ran the test her Vitamin D was still extremely low and the vitamins seemed to have no effect. This led them to believe there is something wrong with her vitamin uptake system. After many other tests and no results they finally decided to run an allergy titer on her and discovered that she reacted very strongly to wheat. She has been gluten-free since and still on a very strict vitamin regimen, including pre-natal vitamins because they are so rich in all vitamins that she needs, and she is doing so much better! She is active again and is back playing soccer which she loves! We can always tell when something slips by us and she has flour or wheat because the next day she is once again markedly irritable and very tired. Everyday is a struggle but this seems to have worked for her and I hope it helps you too.

[FurballsMom]

I concur about the grains.  Glutenology.net has a free video.  It's even posted on YouTube.  You can go to YouTube and simply type in glutenology.net.  Look for the one with the flow chart in the preview and the key words of glutenology.net in the address.

They are saying that all grains, not just the grass grains have a form of gluten in them.  Not all are recognized as they should be by most doctors, because most doctors are operating on outdated 60 year old information.  And, they're not performing all the tests that they should be.  Again, because their information is 60 years out of date.  Most of us actually do have Celiac, even if we do test negative for it.  Doctors operating under this outdated information will never recognize it, so we'll always be considered nuts when their precious blood test comes back negative.  Yeah, well their blood tests are also 60 years out of date.  It should not be used as the gold standard any more.  It gives too many false negatives.

The newer information says to stay away from ALL grains.  Rice is the only one that tested with only 5% gluten.  Everything else, including the ones we're told are gluten free still tested near the 40% mark.  Gluten is the group of proteins and not really the name of the protein.  There are two in wheat.  The main one is Gliadin.  I don't remember the other one.  

The point is that this is newer information.  The video explains that gluten intolerance is the cause of autoimmune illnesses besides Celiac.  Doctors operating with the outdated information don't recognize this.  Those with autoimmune illnesses may or may not recognize that gluten is making their illnesses worse.  Most have to figure this out on their own without the doctors' help, because Celiac is still the only autoimmune illness they recognize as being caused by gluten intolerance.

According to this video and several other resources I've encountered, people with the diagnosis of IBS all have gluten intolerance and should stay away from gluten.  This video isn't the only source that is saying to simply stay away from all grains, but it is a good video.  It even explains why.  People with Fibromyalgia should also stay away from all grains.

According to some resources I have encountered SOME, not all, autoimmune illnesses can be reversed with careful steps like this.  The key word here is still SOME, not all.  Some is better than none and is definitely still a hopeful word for people with autoimmune illnesses.

[ruffmagruff]

gluten is a protein found in wheat and related grains. you would benefit most from cutting out all relatives of wheat. i even cannot do oats, which some who cannot tolerate gluten can do. there is a spectrum of tolerance. celiac is the most severe.

also i would suggest you keep a watch out and do some research about mold in foods. this is often very connected.
https://www.facebook.com/events/149204058529555/

love
~ruff magruff

[rachelista]

Thank you for your post! I was very interested when I read the part about relating the shortness of breath to a wheat/gluten allergy. Today I was just wondering if that was my very problem. I thought I had exercise-induced asthma, but recently got tested and found out I had nothing of the sort. So my next educated guess was that maybe I should try cutting out wheat or gluten for a while and see if I just feel overall more energetic as well as breathe better.

I'm excited to see what happens! But I still am wondering if I should just cut out wheat and not gluten, or gluten and not wheat, or just cut out both. I don't know, any suggestions???

[ruffmagruff]

it doesnt matter what you call it,

you ingest wheat, you get all of these symptoms and its horrible. you do not need to think about it any more. stop eating all gluten! its hard at first but now its so easy, there is almost limitless food without gluten.

i had one Iga tranglutiminase come back negative, doc said i prolly didnt have celiac, but i had severe acid, indigestion, diahreaah, pain, lactose intolerance...now i have been gluten free for at least 5 months and i feel excellent compared to how i used to. i can eat dairy all i want. my intestines are healing.

just do it, it cant hurt you. but even a little bit of gluten can.
if you have an allergy, you have to totally avoid it, or you wont do much good.

i eat tons of veggies, my caloric needs are met with mostly beans and fish

please if you are hurting dont wait for a stupid doctor who sees you for 10 minutes a month...you know how you feel you know when youll feel better!

good luck
peace be
love free

~ruff

[aat04c]

I am having the same problem!! I am 23 years old and I no longer have health insurance, so getting a blood test for Celiac's disease may  have to wait. I've heard of people testing negative, but still having a sensitivity to gluten, so they still give it up altogether. As for me, I've given up eating gluten and I already notice a remarkable difference. I've had stomach problems since a child and doctors never knew what was wrong with me. After doing much research, I decided to cut wheat out of my diet. Sometimes, only you truly know what's best for you in the end. If eating gluten is making your life miserable, screw validation and do what you think is best for you.