Worried My Doc Has Ordered The Wrong Test!

[speedy2056]

Hi,

I've recently suspected wheat intolerance or allergy as I ate some bran flakes as a cereal on Tuesday and I experienced severe stomach cramps. It's now Friday and I feel what can only be described as now like a mild bruising kind of pain in the middle of my stomach. The pain is now less than what it was two days ago, but it is still there in a mild form.

My stools were sand like in texture and I usually get a mild runny nose and some itching around the face and arms when eating food with wheat/gluten in it. I also experience moodiness, lethargy and anxiety. Heart rate also increases.

My doctor today has ordered a caeliac blood test but I am now worried it won't show if I just have an intolerance to it since I heard they were two different things? Is Caeliac testing for an allergy or intolerance? Will Caeliac testing tell whether I am both intolerant or allergic to wheat? That last question is the one that bothers me the most. And what if I am just intolerant or allergic to gluten, and that doesn't show either? I am aware that gluten and wheat often go hand in hand, even though it has been said they are still different to one another.

It's worth noting that I have a latex alergy and I am thinking there could be a cross reaction. I get severe stomach cramps when I consume passion fruit, too, and that is another cross reaction food with latex.

Also, my doctor did state that I did not need to be eating wheat for the test to diagnose me as positive, but I called a special allergy helpline and they said that wheat needed to be in my diet for up to 8 weeks in advance for caeliac testing. This is fine, but does that mean continuous feeding of wheat? I have been eating a mostly wheat free diet since Tuesday now. I did experience the same symptoms yesterday when I consumed white rice. It contained indian wheat flour, or something. It took about 4 hours for me to feel good again. Onset of these symptoms after eating wheat usually occur within a half hour.

When I am off a wheat/gluten diet the change is instant! My energy increases, there is no lethargy, no anxiety, no itching or anything irritable to my body.

I'd appreciate some help to put my mind at ease that my doc has ordered the correct testing.

Thanks!

[mushroom]

Hi Speedy, and welcome.

Let's start with allergy and intolerance/sensitivity first. Celiac (coeliac) disease is not an allergy to wheat, it is an autoimmune reaction reflecting an intolerance to wheat by the body. I am not a scientific whizzbang on the medical whys and wherefores, but the celiac reaction is an IgA or IgG response whereas an allergyy (which results in hives/anaphylaxis) is an IgE mediated response. Your symptoms sound like an intolerance rather than an allergy so yes, a celiac test would be appropriate. What tests has your doctor ordered for you, as there are several that can be done; ideally one would do all of them. Celiac testing will not tell if you are allergic to wheat, but it does not sound like you are having allergic reactions.

Next comes the knotty issue of intolerance. Celiac disease is the form of gluten (a protein found in wheat, rye and barley) intolerance that they have been able to devise tests for. However, even if those tests are negative, it does not mean that you are not gluten intolerant because scientists and doctors have finally caught on to what patients have been saying for years, that there is non-celiac gluten intolerance. Celiac testing measures antibodies in the blood, and in the small intestine by endoscopy and biopsy. But gluten attacks other areas of the body, the major other area being the brain, where the patient may have no gastrointestinal symptoms. So diagnosis is not easy and is a very frustrating process which causes much confusion.

You must be eating gluten for the test results to be accurate, even though many doctors will tell you the opposite, and yes, 8 weeks is the minimum, and you should eat the equivalent of 3 to 4 slices of bread per day. Get back on the gluten, and solidly, before your testing. A few days won't make much difference but any longer than a week could.

Hope this helps a bit.

[speedy2056]

Thank you, mushroom, that was helpful!

Well, today I went back on wheat/gluten since reading your reply (not sure if there is a solid difference between gluten and wheat hence why I put the / there) and I fell back into having lower energy and the usual symptoms more or less right away from eating it.

What about the mild itching and snuffly nose? Those are VERY mild but they still do occur. That's why I thought it was an allergy rather than intolerance.

My doc asked if I have a lot of bowel movements, and I do through the day. I guess this points to intolerance since the body just wants to get rid of it, but I'm still confused by the classic allergy symptoms of irritating eyes, etc. Can you still have allergy like symptoms from intolerance?

I'm not sure if this means anything, but there are boxes that have been ticked on the blood test form, and these are: U/E, LFTs and RANDOM SUGARS. The doctor has also written "Caeliac antibodies." Clinical details say, "possible wheat intolerance."

Thank you for the help!

  On 6/17/2011 at 3:48 PM, mushroom said:

Hi Speedy, and welcome.

Let's start with allergy and intolerance/sensitivity first. Celiac (coeliac) disease is not an allergy to wheat, it is an autoimmune reaction reflecting an intolerance to wheat by the body. I am not a scientific whizzbang on the medical whys and wherefores, but the celiac reaction is an IgA or IgG response whereas an allergyy (which results in hives/anaphylaxis) is an IgE mediated response. Your symptoms sound like an intolerance rather than an allergy so yes, a celiac test would be appropriate. What tests has your doctor ordered for you, as there are several that can be done; ideally one would do all of them. Celiac testing will not tell if you are allergic to wheat, but it does not sound like you are having allergic reactions.

Next comes the knotty issue of intolerance. Celiac disease is the form of gluten (a protein found in wheat, rye and barley) intolerance that they have been able to devise tests for. However, even if those tests are negative, it does not mean that you are not gluten intolerant because scientists and doctors have finally caught on to what patients have been saying for years, that there is non-celiac gluten intolerance. Celiac testing measures antibodies in the blood, and in the small intestine by endoscopy and biopsy. But gluten attacks other areas of the body, the major other area being the brain, where the patient may have no gastrointestinal symptoms. So diagnosis is not easy and is a very frustrating process which causes much confusion.

You must be eating gluten for the test results to be accurate, even though many doctors will tell you the opposite, and yes, 8 weeks is the minimum, and you should eat the equivalent of 3 to 4 slices of bread per day. Get back on the gluten, and solidly, before your testing. A few days won't make much difference but any longer than a week could.

Hope this helps a bit.

[mushroom]

"Caeliac antitbodies" is a bit vague, (as well as being misspelled ) (If you are British the word is coeliac) The generally recognized tests for celiac are:

1. Anti-gliadin antibodies (AGA) both IgA and IgG
2. Anti-endomysial antibodies (EMA) - IgA
3. Anti-tissue transglutaminase antibodies (tTG) - IgA
4. Total IgA level.
5. Demidated Gliadin Peptide (DGP). antibodies

I don't know where you are and what health system you come under, but if I were you I would try to get the lab to run them all.

As for wheat vs.gluten, there is always gluten in wheat, but not necessarily wheat in gluten, since gluten is also found in barley and rye, so if you drink a beer which contains barley malt you are getting gluten. If you drink a wheat beer you are getting gluten.

And yes, you can get a sniffly nose and itching from food intolerances - it does not necessarily mean an allergy..There are several foods that make me itch, but I am not allergic to them. My hub gets a stuffy nose from alcohol but is not allergic to it.

[speedy2056]

  On 6/18/2011 at 3:16 AM, mushroom said:

"Caeliac antitbodies" is a bit vague, (as well as being misspelled ) (If you are British the word is coeliac) The generally recognized tests for celiac are:

1. Anti-gliadin antibodies (AGA) both IgA and IgG
2. Anti-endomysial antibodies (EMA) - IgA
3. Anti-tissue transglutaminase antibodies (tTG) - IgA
4. Total IgA level.
5. Demidated Gliadin Peptide (DGP). antibodies

I don't know where you are and what health system you come under, but if I were you I would try to get the lab to run them all.

As for wheat vs.gluten, there is always gluten in wheat, but not necessarily wheat in gluten, since gluten is also found in barley and rye, so if you drink a beer which contains barley malt you are getting gluten. If you drink a wheat beer you are getting gluten.

And yes, you can get a sniffly nose and itching from food intolerances - it does not necessarily mean an allergy..There are several foods that make me itch, but I am not allergic to them. My hub gets a stuffy nose from alcohol but is not allergic to it.

There is nothing like what you mentioned on the form. Yeah, I live in the UK, lol. I will ask on Tuesday before having the test done for what they are actually testing for and I will mention what you have told me about the Ig things.

Btw, I have anxiety issues, such as OCD, and when I went off the gluten/wheat diet, my anxiety levels and OCD fell! I wasn't really experiencing any anxiety at all! I ran a check on Google and found that Ceoliac disease is closely related to OCD.

Thanks!!

[kareng]

Open Original Shared Link

Look down to the second page to see more tests. Maybe something from doctors who specialize in Celiac would help to show your doc. Highlight both sets of suggested tests.

I had the pediatrician write the names of each test on the lab request sheet. I found that the standard "Celiac panel" was a bit out of date and missing some.

[speedy2056]

  On 6/18/2011 at 12:35 PM, kareng said:

Open Original Shared Link

Look down to the second page to see more tests. Maybe something from doctors who specialize in Celiac would help to show your doc. Highlight both sets of suggested tests.

I had the pediatrician write the names of each test on the lab request sheet. I found that the standard "Celiac panel" was a bit out of date and missing some.

Thanks for the link, Karen, that was useful. I'll be sure to take some notes down to show the doc tomorrow before the blood test.

[kareng]

  On 6/20/2011 at 6:08 PM, speedy2056 said:

Thanks for the link, Karen, that was useful. I'll be sure to take some notes down to show the doc tomorrow before the blood test.

Don't take him your notes. Take him a copy of the page. Circle the tests. It is more likely a doctor will believe the info if it comes from other doctors. Your just some stupid patient who thinks he knows more than a doctor and has been shopping for illnesses on the internet. (not my actual opinion, just a possible doctor's thoughts).

[speedy2056]

Well, the person who took the blood test today had no idea what the test was for. She said that wasn't her job to know, only to take the test. She did ask if I wanted to delay the test for another day to ask the doctor, but I declined as I just wanted to get it over with.

I'll know the result in a week, and I'll ask the doctor then.