Need advice - Camryn's having problems

[Camryn'sMommy]

Hi everyone, I haven't been on in a while because Camryn has been doing so well. She is 8 years old now (2 1/2 when diagnosed with LC). A GF Diet has kept her symptom free since diagnosis, which the occasional glutening that is hard to avoid with other kids in the house. In the last month she has had stomach pain above the belly button. She says it gets worse after urinating. We have seen numerous pediatricians and had an abdominal x-ray. She sees a doctor at CHOP on Thursday who will do blood work etc. Some doctors think the pain/nausea is due to post nasal drip....others think it is psychological (which I do believe is part of it, she was diagnosed with anxiety). We are seeing the GI Dr. to make sure it is not related to her LC. Do these symptoms sound familiar to any of you? She also gets headaches and the pain does not get better after a bowel movement. She says the pain ranges from 5-7 on a pain scale of 1 to 10. Any insight would be appreciated! They put her on zantac and flonase.

[tex]

Hi Laura,

It's good to see an update from you about Camryn, but I'm sorry to see that she's having problems. Her symptoms make me wonder if maybe there is something in her diet that is causing her to produce antibodies. Sometimes certain food sensitivities don't mature for years, and sometimes we have to eat a certain food for a long time before the antibody level exceeds the threshold at which symptoms begin to present. This is true for relatively "weak" antigens, and for foods where the total protein content (of the reactive protein) of the food is relatively low. Oats is an example of such a food — it can take a long time for reactions to the avenin in oats to develop in many individuals. And IMO, frequent headaches are typically associated with food sensitivities. Most of us rarely have a headache after we fine-tune our diet.

And while I agree that attitude and mood are important influences, remember that many, many (perhaps all?) doctors tend to claim that a symptom is psychosomatic if they can't find an obvious physical cause, after they go through their limited series of tests. In most cases, the symptom (and the cause of the symptom) does indeed exist — the doctor just wasn't able to find it, usually because they don't know what to look for.

Back when I was reacting, I very often had a pain in the belly button area. And it did indeed seem to be associated with urinating, though I have no idea why. It almost seemed as though the bladder was tugging on the belly button. Anyway, that symptom is one more reason why I believe that her complaint is legitimate, and probably associated with a food sensitivity. Remember that doctors understand virtually nothing of the many satellite issues that are associated with MC.

Perhaps an EnteroLab test would shed some light on the problem. They have an additional test now, (Panel C), that checks for antibodies to 11 additional antigenic foods, including almond, beef, cashew, chicken, corn, oats, pork, rice, tuna, walnut, and white potato.

Also, I see that Camryn wasn't tested for soy and eggs in her original test order. It might be beneficial to test for antibodies to those foods, just to rule them out.

Thank you for posting, and please keep us updated on her progress. And if you should order any EnteroLab tests, we would very much appreciate you sharing the results with us, to add to our information database. I hope that you can resolve her current problems soon (and hopefully by means of a simple diet change, rather than by medical intervention).

Tex

[Camryn'sMommy]

Tex,

Thanks for responding. I do wonder if she has other sensitivities, so I will look into the enterolab test. We had to change GI doctors because her Doctor is no longer practicing (she is going into research). The new Dr. is a renowned IBD specialist, so hopefully he will be able to help us as well.

I hope all is well with you! Take care and I'll let you know what we find out.

Thanks,
Laura

[tex]

Laura,

I forgot to mention that headaches are often associated with histamine intolerance. Many of us are discovering that we have histamine issues, and in many cases, if we fall out of remission (and our diet was not compromised), or if we can't quite reach remission (despite careful attention to diet), then histamine may be the problem. It's easy to test out. If taking an antihistamine or 2 each day brings improvement within a day or 2, then histamine intolerance needs to be considered.

Histamine intolerance does not work the same way as other food sensitivities. Histamine reactions tend to be triggered by sort of a dosage effect. IOW histamine can accumulate in the body, and if we exceed our tolerance limit for histamines at any given time (analogous to a bucket filling and then overflowing), we will react. The reaction can be due to too many high-histamine foods in the diet, and/or it can be caused by foods or medications that promote the release of histamine (from mast cells).

Examples of high-histamine foods include:

Alcoholic beverages, especially beer and wine.
Anchovies
Avocados
Cheeses, especially aged or fermented cheese, such as parmesan, blue and Roquefort.
Cider and home-made root beer.
Dried fruits such as apricots, dates, prunes, figs and raisins (you may be able to eat these fruits - without reaction - if the fruit is thoroughly washed).
Eggplant
Fermented foods, such as pickled or smoked meats, sauerkraut, etc.
Mackerel
Mushrooms
Processed meats - sausage, hot dogs, salami, etc.
Sardines
Smoked fish - herring, sardines, etc.
Sour cream, sour milk, buttermilk, yogurt - especially if not fresh.
Soured breads, such as pumpernickel, coffee cakes and other foods made with large amounts of yeast.
Spinach, tomatoes
Vinegar or vinegar-containing foods, such as mayonnaise, salad dressing, ketchup, chili sauce, pickles, pickled beets, relishes, olives.
Yogurt

and foods that promote the release of histamines include:


Alcohol
Bananas
Chocolate
Eggs
Fish
Milk
Papayas
Pineapple
Shellfish
Strawberries
Tomatoes

http://www.michiganallergy.com/food_and_histamine.shtml

We don't have to avoid these foods entirely (if we have histamine issues), we just have to reduce our intake enough to make sure that we do not exceed our limit. And each of us apparently has our own unique tolerance level. Some of us are much more sensitive to histamine than others.

Here are some links to short articles that contain basic information about mast cells, and how mast cell issues are associated with microscopic colitis, if you want to read more about the problem:

What are mast cells?

How are mast cells associated with microscopic colitis?

How do I know if mast cells are causing problems for me?

How are mast cell issues treated?

Tex

[Camryn'sMommy]

Tex,

I think I may know what is causing her recent problems. She has been eating a lot of popcorn in the last month (and never really ate it before). I looked up symptoms of corn allergy and it say abdominal pain, frequent headaches, recurring ear infections, sinus infections and nasal congestion/cough. Those are her exact symptoms. So, I will bring it up to the Dr. when we see him tomorrow morning. I also read that popcorn is very difficult to digest, especially for people who already have GI issues. What do you think? She spent 2 hours crying in the bathroom last night (but nothing happens) and an hour this morning. She went to school with tears in her eyes again (she has missed a lot of days due to this).

Thanks,
Laura

[Camryn'sMommy]

Also, she has tried several anti-histamines (since they thought her nasal congestion was due to seasonal allergies) and they do not help at all. We've tried benadryl, flonase and zyrtec.

[tex]

What do you think?

I think you're right on target. When trying to track down the source of food allergy or intolerance symptoms, the first place to look is recent diet changes that occurred just before the symptoms began. You're an excellent food detective.

The inability to properly digest zein (the primary protein in corn) can even cause leaky gut, just like wheat gluten, and that can open the door to symptoms in just about any part of the body.

Another member posted a link to a list of corn derivatives used in food, yesterday, so you may find it to be a handy reference. I had to avoid corn when I was recovering, and it's really a tough one to have to avoid. Derivatives of corn are literally in almost all processed foods and drinks — far more products than those that contain gluten.

Corn Allergy?

That list fails to mention this, but when checking labels, remember that most of the world refers to this grain as "maize". The term "corn" is mostly used in the U. S. and Canada. IOW, any reference to maize, means "corn".

You're right of course, if she didn't see any improvement from the use of antihistamines, then histamine is not the problem. I agree that corn is the prime suspect.

Thanks for sharing your insight, and good luck at the appointment.

Tex