Food allergy testing.

Vanessa · Post by **Vanessa** » Fri Jul 11, 2014 2:39 pm

Hi all,

It's been a while since I've posted. As we all know navigating this thing is a second full time job! My question is about food allergy testing. I'm being seen by a chiropractor who specializes in detox and nutrition. I had been seeing these people for a year before I got my diagnosis of CC. I hadn't been feeling vital.....hair loss, skipped heartbeats, and just wanting to clean up the diet in general to see if all these little whispers my body was giving me would go away. I started feeling very well and a lot of symptoms went away. Then when I just thought I was on the brink of great health BOOM watery D for days! I did not get a colonoscopy for 2 months thinking it could be the supplements I was taking. Anyway, when I was diagnosed I got the enterolab testing done and immediately went GF and DF. My scores were 44 for gluten, 11 for dairy, 16 for soy, and 9 for eggs. I've been GF and DF for 4 months and have seen a lot of improvement but still can have 4-10 soft to watery stools daily. Some days I have normans but those days are few and far between. It starts out that way and then progressively becomes softer. I can see food in my stool still as well. My fat malabsorption test was below 30. I try and stay away from soy as much as possible (I think it's hiding in things I'm not aware of). Anyway to my real question....I decided to test for extra food allergies (with the chiropractor) by a company called Food Safe. It uses blood spot testing to test for 95 foods you are creating anti bodies to. I had no severe allergies! I was only moderately (meaning I could rotate these foods every 4 days if I wanted) allergic to Bananas, Pineapple, Brewer's yeast, Garlic, and Tomatoes. No dairy or gluten allergy? Did they not show up because I haven't been eating these foods? I haven't met with her yet to discuss the results. Maybe I should have spent my money on another enterolab test. I just want to get this thing under control. I'm confused about allergy testing and now am wondering how reliable this was. Not many people understand this disease so she is just trying to heal my inflamed gut so many of the supplements she wants me to take I have to go extra slooooow. Maybe I should try an elimination diet (not excited about that with all of the fatigue and lack of motivation that goes along with it). This is a big life change. I've had to cancel my husband and I's tenth wedding anniversary vacation and have missed a lot of work. I have not tried an antihistimine yet. The mast cell thing is above my head......I need some more brain cells to grow back:) Sorry for the long post. Any suggestions would be helpful. Next she wants to try another stool test that can actually measure the inflammation in the gut and to see if I'm growing any weird bugs or bacteria. Another 400 bucks... OY!

Gabes-Apg · Post by **Gabes-Apg** » Fri Jul 11, 2014 2:51 pm

My suggestion, with your enterolab testing and soy being 16, why didn't you eliminate soy??

Vanessa · Post by **Vanessa** » Fri Jul 11, 2014 3:07 pm

I did eliminate soy also. I feel it is in so many things my inner guidance is telling me I'm probably getting some....not on purpose! I feel I am sooo brain dead that I wonder things like can I eat hummus if I'm allergic to soy?

Gabes-Apg · Post by **Gabes-Apg** » Fri Jul 11, 2014 3:19 pm

My reaction to soy is worse than to gluten.
Thus far, 4.5yrs post Dx, I have not handled any legume.
If you are having hummus, the seasame may be an issue as well.

IMO Other than enterolab, the only close to accurate testing is 'listen to your body'
Keep a food/activity/symptom journal, while there are symptoms and d, stick with bland, well cooked, low fibre, not too many different ingredients per meal, eating plan.
When the bm has improved, start introducing small quantity of ingredient. Note any reactions.
Have a small amount of the ingredient each day for 3 days. After the 3rd day, no symptoms then that ingredient is ok.

In regards to mast cells/histamines it may seem very overwhelming, the important basic is, if you take antihistamine and the symptoms improve then there is a histamine/mast cell issue...
Make sure you get a GF DF version.

Keep in mind mast cells//histamine is not just about ingredients. It can be;
Enviro/seasonal - pollen, dust, mould, etc etc
Enviro/chemical - household cleaners, if near farm land fertilisers etc, or if near industrial location pollution
Activity - exercise, dental work, getting a hair colour done etc
Derma - hair products, moisturisers, make up with too much gluten soy etc.

It can be a combo of these (including any ingredients)

Vanessa · Post by **Vanessa** » Fri Jul 11, 2014 3:23 pm

Thanks Gabes!

Post by **tex** » Fri Jul 11, 2014 5:55 pm

Hi Vanessa,

I have to agree with Gabes — if there are still traces of soy or legumes in your diet, then they are probably the main reason why you are still having symptoms. It only takes trace amounts to perpetuate the inflammation.

Most blood tests are reasonably accurate for detecting classic allergic reactions (IgE-based reactions that produce symptoms in/on the skin, or the upper respiratory system). but they tend to be of little value for trying to pinpoint food sensitivities in the digestive system (which are mostly IgA-based), so they typically aren't very useful for someone who has MC.

And if traces of soy are remaining in your diet, there's a good chance that traces of gluten might also be showing up there due to cross-contamination or some other source. While it's certainly possible that you may indeed have other food sensitivities, they are a moot point if any traces of the primary offenders (gluten, dairy, soy) are still sneaking into your diet, because they will trump any reactions caused by the less-significant food sensitivities.

And as Gabes mentioned, if taking an antihistamine or 2 results in an improvement in your symptoms, then you have a mast cell/histamine problem.

Tex

Vanessa · Post by **Vanessa** » Fri Jul 11, 2014 6:39 pm

Hey Tex,

The blood test claims to be IgA based blood testing? I still live with people who eat gluten. Thanks for the suggestions! I will try an antihistamine and start a food diary if things continue to be bad. I've also noticed my symptoms are worse during ovulation and menstruation. I wonder if the other ladies have noticed this hormonal component? Thanks for such a quick response!

Post by **tex** » Fri Jul 11, 2014 7:42 pm

The blood test claims to be IgA based blood testing?

So are the celiac screening blood tests, but unless there is enough small intestinal damage to qualify for at least a Marsh 3 level of damage (major villus atrophy, which usually takes several years of accumulated damage), the blood tests will not detect celiac disease. By comparison, the EnteroLab stool tests will detect the antibodies in an early Marsh 1 condition (lymphocytic infiltration in the tips of the villi, but not yet any villus damage). IOW, the EnteroLab stool tests will typically detect gluten sensitivity several years sooner than the blood tests will show a positive test result. Celiac disease has to be fully developed before the blood tests will show a positive result. There is no blood test that will reliably detect gluten sensitivity, except in the case of fully-developed celiac disease.

I still live with people who eat gluten.

If there is any wheat flour in the house, your diet is almost surely cross-contaminated with gluten. I'm speaking from experience. Been there, done that. It's pretty much impossible to avoid gluten if anyone uses it in the same house where your food is prepared, no matter how careful everyone might be. There will be enough particles of flour floating around in the air and settling on everything to contaminate your food with trace amounts of gluten regularly. At least that was my experience.

Whether or not you react to those trace amounts depends on your sensitivity threshold. Some of us can tolerate more gluten than others, but many of us are extremely sensitive to it.

Thanks for the suggestions! I will try an antihistamine and start a food diary if things continue to be bad.

That's definitely a good plan.

I've also noticed my symptoms are worse during ovulation and menstruation. I wonder if the other ladies have noticed this hormonal component?

Yes, that's frequently reported. MC is very responsive to hormonal changes. Many women cannot achieve remission if they are taking a contraceptive, for example. Some members have found that even transdermal HRT prevents them from reaching remission.

Please keep us posted on your progress. It definitely helps to compare notes.

Tex

kayare · Post by **kayare** » Sat Jul 12, 2014 11:21 pm

Hi Vanessa,

I am like Gabes and react very strongly to soy. I even react to the soy in a single piece of chewing gum. I don't eat any legumes. I found a major difference when I finally eliminated all traces of soy and added an antihistamine at bedtime. I hope this helps you, too!

Kathy

Tonya · Post by **Tonya** » Tue Jul 15, 2014 6:44 am

Vanessa,

I have been gluten free for 3 1/2 months. I am a vegan so dairy and eggs weren't a problem to begin with. My body is reacting about the same as yours, some improvement in BMs, some normans especially the first one in the morning but then they get looser as the day goes on, though they are not as watery as in the past and there is less urgency. I no longer have a lot of lower abdominal pains and intestinal gurgling. I have more energy and less brain fog also, that was evident a couple of weeks after going gluten free. I have not gone soy free yet, that will be a big problem being a vegan so my doctor (GP) suggested I wait to see if the gluten free diet worked for me. If I have not seen any improvements after 6 months GF then I will try eliminating soy and legumes. I have not had the enterolab testing, I find it a little expensive and they test for a lot of stuff that I don't eat anyway so it seemed like a better idea for me to try an elimination diet.

As to your question about hormones I believe that is what triggered my MC in the first place. I started having digestive problems about the time that I started having perimenopause symptoms. They became progressively worse over the course of a few years until I was finally diagnosed last fall with CC. In the past month or so it seems like the hormonal changes are not affecting my digestion as much, maybe a result of the GF diet. After a lot of research and the luck of finding this wonderful support forum I made a lot of changes in my life. On the advice of a lot of people on the forum I have made great strides in controlling my day to day stress, mostly caused by hormones and frustration over this disease. I feel that this has helped tremendously in my healing. It has taken time and patience but I have learned to accept that I don't always feel good and appreciate the days when I am feeling better.

Tonya

Post by **tex** » Tue Jul 15, 2014 8:50 am

Hi Tonya,

In case you are still eating oats, please be aware that many of us are also sensitive to the avenin in oats. Avenin is the reactive storage protein in oats that's the equivalent of gluten in wheat. It's a weaker protein, and therefore a weaker antigen, but it cleans me out about 3 hours after I eat it, so, like many others here, I have to avoid it. Unfortunately, a high percentage of us are sensitive to soy and most legumes. I'm one of the lucky few who are not.

FWIW, EnteroLab does offer a couple of tests for vegetarians that are sort of useful for vegans, in case trial and error testing by means of the elimination diet does not allow you to reach remission. The C2 test panel would probably be the most helpful. They also offer a B2 panel that tests for some non-food items, and they offer a discounted combination of the two panels.

Here's a rundown on the C2 panel:

https://www.enterolab.com/StaticPages/T ... px#PanelC2

Here's a link to the combination B2 + C2 panels:

https://www.enterolab.com/StaticPages/T ... #PanelB2C2

Thank you for posting your experiences and your insight.

Tex

Tonya · Post by **Tonya** » Thu Jul 17, 2014 7:12 am

Tex,

Thanks for the information. I still haven't ruled out the enterolab testing I just want to wait 6 months after going GF to see if that will help. I have not been able to pinpoint any food that causes me a problem by itself. I don't have any reactions to anything that I eat, my BMs are fairly regular and predictable, just loose. I have not been eating oats for a while, on advice of my acupuncturist. We worked with my diet extensively at the beginning of the year to help clear up a dampness problem (in TCM) that was causing debilitating fatigue. Oats was one food that was a problem for me, I also have to avoid bananas and citrus fruits for the same reason.

Tonya

Post by **tex** » Thu Jul 17, 2014 10:40 am

Tonya wrote:I have not been able to pinpoint any food that causes me a problem by itself. I don't have any reactions to anything that I eat, my BMs are fairly regular and predictable, just loose.

I had the same experience with not being able to pinpoint any specific food-based problems, despite keeping a detailed diet/symptoms diary. The problem appears to be the fact that anti-gliadin antibodies have a half-life of 120 days, so their effect lingers for a long, long, time after gluten is removed from the diet. Some people can see prompt improvement when they remove gluten from their diet, but for most of us, it takes many months before the effects of those antibodies dwindle down to a level where we can reliably judge the effects of various other foods in our diet. IOW, gluten trumps everything else for most of us, so we have to purge those antibodies from our body before we can get on with tracking down our other food sensitivities.

So I definitely agree that you will be better able to assess the situation after 6 months on a GF diet.

Tex

Tonya · Post by **Tonya** » Fri Jul 18, 2014 7:20 am

Tex,

Thanks for the positive reinforcement. My strategy now is being careful of what I eat and a lot of patience. Time will tell.

Tonya

Zizzle · Post by **Zizzle** » Fri Jul 18, 2014 3:42 pm

Here's an interesting overview of some food allergy tests. Notice they do not speak well of Alcat and Leap, based on their lack of reproducibility (sending 2 samples from the same patient and getting different results!).

http://www.ibstreatmentcenter.com/Newsletters/Aug13.pdf