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Results are in, and I am shocked! (Pleasantly)

 
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JulieS

unknown IP

Joined: 04 Jun 2017
Posts: 9
User's local time:
2017 Sep 25 - 5:24 PM




PostPosted: Tue Jun 20, 2017 3:02 pm    Post subject: Results are in, and I am shocked! (Pleasantly) Reply with quote

After 8 weeks of WD and loss of 10 pounds, I finally got a diagnosis. Found this website and I am eternally grateful for all the knowledge and advice.

Now I would like to ask directly for your help. I am determined to manage this condition via diet. I do not want to take steroids (as recommended by my GI doctor).

My EnteroLab results just came in. I am shocked and pleasantly surprised that the results don't seem so bad. Am I deluding myself?? What is your advice for my diet based on these results? Should I still avoid dairy, soy and eggs? If yes, for how long? Are oats ok? (I have been eating oatmeal for breakfast most mornings and don't seem to have a problem...) Nightshades? Peanut butter? Beans?

Prior to receiving the lab results I was gluten, dairy, soy, and egg free for about 2 weeks. The WD stopped. I have occasional abdominal discomfort, but it is so slight in comparison to prior to my change in diet. However, I notice that when I get hungry (about every 2 hours), I am uncomfortably hungry. In the past, the hunger would pass and I could function till mealtime. Now, I just HAVE TO EAT something.

Here are my EnteroLab results:

Fecal Anti-gliadin IgA 11 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 3 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 3 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 5 Units (Normal Range is less than 10 Units)
Mean Value 11 Antigenic Foods 7 Units (Normal Range is less than 10 Units)

While all of the foods tested can be immune-stimulating, the hierarchy of reactions detected were as follows:

Food to which there was no significant immunological reactivity:
Corn
Rice
Beef
Chicken
Pork
Tuna
Almond
Walnut
Cashew
White potato

Food to which there was some immunological reactivity (1+):
Oat

Food to which there was moderate immunological reactivity (2+):
None

Food to which there was significant and/or the most immunological reactivity (3+):
None

Within each class of foods to which you displayed multiple reactions, the hierarchy of those reactions detected were as follows:

Grains:
Grain toward which you displayed the most immunologic reactivity: Oat
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Erica P-G
Rockhopper Penguin
Rockhopper Penguin


Joined: 08 Mar 2015

Posts: 1217
User's local time:
2017 Sep 25 - 2:24 PM


Food Intolerances : Gluten, Dairy, Eggs, Soy, Tuna, Beef, Oat, Almonds, Walnuts
Location: WA State

PostPosted: Tue Jun 20, 2017 3:15 pm    Post subject: Reply with quote

Hi Julie,

These are remarkable results indeed.

You will need to maintain Gluten free and that may include Oats because from all my learning from this forum says that the oat protein Avenin is just about as hard on us as Gluten.

You don't react harshly to the Gluten/Avenin just yet but it was creeping up on you so it was just a matter of time and now your body is predisposed to MC due to the damage it now has caused.

If I were you I'd rotate my foods and always keep in mind that Dairy may need to be removed at some point as well as Soy and Eggs...but until you feel those are beginning to bother you (which you will notice believe me - all your bathroom symptoms will present themselves) you maybe able to get away with eating some of them at this time.

Eating fresh/whole cooked foods and staying gluten free should help prolong good health. Also if you ever notice a change take a moment to see if you are on any medication or used a new product etc....as those can be triggers for you as well Wink
_________________
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30494
User's local time:
2017 Sep 25 - 4:24 PM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Tue Jun 20, 2017 9:05 pm    Post subject: Reply with quote

Julie,

All of your numbers are so low that I wonder if you might have selective IgA deficiency. If so, the test results could be false negatives. If you have not already done so, I would suggest you ask your doctor to test you for selective IgA deficiency. It's a simple blood test.

If you do not have selective IgA deficiency then gluten is your primary problem. But Erica is correct. Most people who are sensitive to gluten are also sensitive to oats. It's just a weaker antigen, but it can cause the same type of intestinal damage.

Tex
_________________
cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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JulieS

unknown IP

Joined: 04 Jun 2017
Posts: 9
User's local time:
2017 Sep 25 - 5:24 PM




PostPosted: Tue Jun 20, 2017 9:52 pm    Post subject: Reply with quote

Tex,

Thank you for your response. I will ask my doctor to order the blood test.

I just googled selective IgA deficiency. I will confess that I am having a hard time understanding it all!
What are the implications of selective IgA deficiency and diet? Are you suggesting that the EnteroLabs test results might be misleading and don't show which foods I react to if my IgA is low or non-existent? If this is the case, then i guess I am back to square-one in trying to figure out what I can and cannot eat. I sure hope not.

In the meantime, I will stick to my gluten-, soy-, dairy-, and egg-free diet.

Julie
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30494
User's local time:
2017 Sep 25 - 4:24 PM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Tue Jun 20, 2017 10:39 pm    Post subject: Reply with quote

Yes. Some of the test results might be false negatives if you have selective IgA deficiency. A lot of labs use ELISA testing methods for certain tests and they are the most sensitive for food antibody testing. Therefore EnteroLab uses ELISA tests for their stool tests. Their ELISA tests detect IgA antibodies.

Our immune systems normally produce Immunoglobulin A, G, and M. But if a person's immune system isn't capable of producing normal levels of Immunoglobulin A, for example, then that person cannot build up normal amounts of antibodies (IgA) when exposed to allergens that provoke IgA. That individual is said to have selective IgA deficiency, and trying to use any test that's based on detecting IgA antibodies is not going to produce the expected results. The results of blood tests that are based on this testing method (such as the celiac screening test) would also be unreliable, so it isn't just the stool tests.

Tex
_________________
cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 7075
User's local time:
2017 Sep 26 - 8:24 AM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Wed Jun 21, 2017 5:05 pm    Post subject: Reply with quote

when I saw your results selective IGA deficiency was the first thing I thought of

member Leah has selective IGA deficiency and is a nutritionist - might be worth PM'ing her and asking her some questions (she is not always active here in the forum)
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Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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JulieS

unknown IP

Joined: 04 Jun 2017
Posts: 9
User's local time:
2017 Sep 25 - 5:24 PM




PostPosted: Fri Jul 07, 2017 11:21 am    Post subject: Selective IGA deficiency, vitamin D and magnesium results Reply with quote

Hello again,

My GI doctor was not at all helpful in getting the lab tests done. the message I received from the doctor's office was (and this is a direct quote from the email) "Tell her to go see her PCP. I won't treat her for that."

My primary care physician was wonderful! She even did some research on collagenous colitis before I went in since she had never encountered it before!

Here are the lab results:

IMMUNOGLOBULIN A: 92
Normal: 81-463 (mg/dL)

MAGNESIUM, RBC: 5.1
Normal: 4.0-6.4 (mg/dL)

VITAMIN D, 25-OH, TOTAL: 42
Normal: 30-100 (ng/mL)

VITAMIN D, 25-OH, D3: 9 ng/mL

VITAMIN D, 25-OH, D2: 33 ng/mL

VITAMIN D, 1,25 (OH)2, TOTAL: 55
Normal: 18-72 (pg/mL)

VITAMIN D3, 1,25 (OH)2: 16 pg/mL

VITAMIN D2, 1,25 (OH)2: 39 pg/mL

According to the doctor, all lab results came back normal. So the question is, do I need magnesium and vitamin D supplements?
Once again, thank you for all your help.

Julie
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30494
User's local time:
2017 Sep 25 - 4:24 PM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Fri Jul 07, 2017 2:49 pm    Post subject: Reply with quote

Julie,

I suppose you already know that your GI doc sucks and your PCP rocks, so I won't bother to mention that. LOL.

The listed "normal" range for the test results on the RBC test is wrong because those data were based on subjects 80 % of whom had a chronic magnesium deficiency. Therefore, according to Dr. Carolyn Dean, who wrote some great books on magnesium, a correct normal range for the RBC magnesium test is 6.0–6.5. The lab test result you received is obviously below that, so you are not critically low on magnesium, but you are low on magnesium reserves. For a reference, Dr. Carolyn Dean explains the details in her book, and on her website.

http://drcarolyndean.com/2014/05/magnesium-rbc-blood-test/

Your PCP did an awesome job of ordering tests for you. Your immunoglobulin A level is near the low end of the normal range (most people show 200+), but it should still be a valid OK result, so your EnteroLab results should be valid.

The 1,25(OH)2 results are levels of the active form of vitamin D. I notice that you have a significant D2 level (even in the active form). Most people have a very low D2 level, because D2 is very poorly absorbed, compared with D3. I'm guessing you must be taking a D2 supplement.

Your overall level, though, (42), is fine.

Tex
_________________
cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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JulieS

unknown IP

Joined: 04 Jun 2017
Posts: 9
User's local time:
2017 Sep 25 - 5:24 PM




PostPosted: Fri Jul 07, 2017 2:59 pm    Post subject: Reply with quote

Tex,

You certainly know your stuff. I am impressed! I have been taking a D2 supplement for a few years in conjunction with synthroid for hypothyroid condition. So it looks like my vitamin D levels are OK with my current supplement, but I need more magnesium. I will start the ReMag!

My doctor also told me to take a B12 supplement because I was on the very low side of the normal range. Anything I should be aware of with B12?

One thing we didn't test for, now that I think of it, is calcium. Without dairy products and no leafy green vegetables, do people with MC have calcium deficiencies?

Many thanks.

Julie

P.S. My GI doctor is history. That response to me was the last straw. He won't even get my routine colonoscopy business. If anyone has a good GI doctor in Orlando, please let me know!
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30494
User's local time:
2017 Sep 25 - 4:24 PM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Fri Jul 07, 2017 5:14 pm    Post subject: Reply with quote

Hi Julie,

Regarding me knowing my stuff: Even a blind hog finds an acorn now and then. Laughing

Yes, it's a good idea to take B-12, preferably as methylcobalamin (an active form), because it's much more easily absorbed in active form.

Virtually everyone gets adequate calcium in their diet (even with restricted diets). Many foods are fortified with calcium — the nut milks, for example. Calcium supplements can impose a major cardiovascular risk. Calcium in food does not pose a risk. The secret to avoiding osteoporosis is to keep your vitamin D level in the sufficient range (which you are doing) so that you will properly absorb the calcium in your diet, and make sure that enough magnesium is available to transport the calcium from the blood to the bones and wherever else it needs to go (which you are planning to do). Otherwise your kidneys will have to remove the calcium from the blood and waste it because the blood level of calcium has to be tightly regularly regulated (to prevent cardiovascular issues).

IOW, when magnesium is sufficient, it regulates calcium in the blood by transporting it (in conjunction with insulin) to where it needs to go. When magnesium is deficient, the kidneys regulate calcium in the blood by discarding it. Almonds, fish, eggs, and many other foods are good sources of calcium.

You're very welcome.

Tex
_________________
cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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