Can children have ME?

[Peta]

Hello Everyone,

I'm new to this group and I'll be honest with you - I'm not sure I"m in the right place! I am researching for my 5 year old son and his aunt - I wonder if they could have something like Mastocytic Enterocolitis. I will explain......

My son (5) who has many food intolerances (amines, salicylates and can't tolerate any additives, dairy, wheat). He is much better on a fodmap diet, but did not come up negative for the fructose malabsorption breath test. We are seeing a Biomed doctor and he has high histamine and kyrrptopyrroles and is now starting vit b, zinc, magnesium, vit D and melatonin suppliments. If we stay away from high fructose, sugar, wheat etc my son does not have any bloating, gas, consipation etc. However we are struggling to expand his diet. It is very limited. When I try new foods, I mainly get behavioural problems (depressed, negative, angry, hyper) and sometimes constipation or loose bowel motions.

His aunt and uncle have suffered much food intolerances: bloating, cramps, consitpation. So it appears to run in the family. Recently his aunt tried using Zyrtec and has found that her symptoms when reacting, have been relieved. We are trying to understand how this is helping. This has led me into looking into ME. This is to help his aunt....and inevitabliy my son.

However I am trying to determine an underlying cause and am looking into Mastocytic Enterocolitis. I may be barking up the wrong tree!

Does it sound like something his Aunt and Uncle could have? Is it possible for a 5 year old to have this or something similar?

Thanks for taking the time to read this rather long winded email.

I'd appreciate any advice.

Thanks
Peta

[tex]

Hi Peta,

Welcome to our internet family. Yes, this family of diseases can develop at any age, and since your son's aunt found that her symptoms were relieved by an H1 histamine blocker, that's pretty strong evidence that she does indeed have ME. From your description, there is a very good chance that your son also has the problem.

Since humans evolved on the paleo diet for hundreds of thousands of years, and only recently began eating neolothic foods, (grains, dairy, legumes, etc.), the safest diet for your son would almost certainly be based on the paleo diet, though you may have to fine tune it a bit, since there will probably be a few paleo foods that your son may not be able to tolerate.

Personally, I don't place much merit in the hydrogen breath test, since all it takes to confound that test, is a bacterial imbalance, which is rather common for most of us who suffer from this family of diseases. Many of us have problems with fructose, so we have to minimize it, (and in some cases, totally avoid it), in our diets.

Have you read what Dr. Lewey has to say about this issue? He's a celiac doctor/researcher who stays on the cutting edge of related developments.

http://thefooddoc.blogspot.com/2008/02/ ... demic.html

http://thefooddoc.blogspot.com/2008/02/ ... -i-be.html

You may be interested in these past discussions:

http://www.perskyfarms.com/phpBB2/viewt ... erocolitis

http://www.perskyfarms.com/phpBB2/viewt ... erocolitis

http://www.perskyfarms.com/phpBB2/viewt ... erocolitis

http://www.perskyfarms.com/phpBB2/viewt ... erocolitis

http://www.perskyfarms.com/phpBB2/viewt ... erocolitis

Again, welcome aboard, and please feel free to ask anything.

Incidentally, our youngest member was 2 and a half years of age when she was diagnosed with MC, (well, actually her mother joined on her behalf), but she is doing very well, and she regularly surprises her doctors with how well she is developing, by controlling her symptoms with diet alone, (after her doctors insisted that diet has nothing to do with this disease).

Tex

[ant]

Dear Peta

Welcome. I think that a gene test for gluten sensitivity amongst members of your extended family would help pinpoint many issues.

All the best, Ant

[Gabes-Apg]

Peta
where abouts in oz are you? i am a brisbane gal

the unfortunate thing about MC it can affect any person, any age.
when i was first diagnosed articles on the net stated things like 'prevelant in women over the age of 55'
When i joined this site - i was re-educated to the facts of MC any person, any age.

although the diet to minimise symptoms (and be close to well) appears limiting and can be very very selective, IMO it is a much much better option that using medications to bandaid the symptoms
(i am using diet as my main management tool)

On this site there are some really amazing knowledgeable people (like Tex) who have and can continue to assist you with your research.

I hope you find some answers and can help your son and aunt

take care

Gabes

[mbeezie]

Hi Peta,

I have mast cell issues so I certainly understand what your son is going through. Yes, children can have mast cell problems. Mast cell problems can run in families, although it's poorly understoond at this point - I am certain my 10 year old son takes after me because he also has symptoms. Since your son had a high histamine level, did they check to see if his tryptase was elevated? To me, this would be the next logical step. Does he have other symptoms?

The best resource for mast cell problems is the mastocytosis society and their website is www.tmsforacure.org. But even the mast cell experts don't fully understand the importance of diet. I think the paleo diet Tex referred to is your best bet, along with a low histamine diet http://www.urticaria.thunderworksinc.co ... tamine.htm Here is a good article on mast cells and GI motility problems http://alford.grimtrojan.com/Mast_Cells ... isease.htm

I'm certainly not an expert, but I have done my fair share of investigating on this issue, so don't hesitate to ask.

Take care,

Mary Beth

[tex]

Peta,

Mary Beth is just being modest. She is a licensed, professional dietitian, who understands MC and ME and mast cell issues, and I can absolutely guarantee you that there are precious few dietitians in the world who even fully understand dietary food sensitivities, let alone MC, ME, and/or mast cell issues. As she correctly pointed out, most "experts" don't understand the importance of the diet connection with these issues. For many of them, diet isn't even on their radar, unfortunately.

Tex

[Peta]

Hello and thanks to all who have replied,

I've taken a while to reply as there is a LOT of info to sift through. I won't pretend to have done anything but scrape the surface. You've all given me a great deal of info and leads to persue and so I thank you. I'm not sure if I'm meant to reply to you all through this post - perhaps I'm meant to do separate replies (I'll work it out as I become more familiar).

Tex, thank you for the amazing amount of information. I have read through them once and will now need to go back through them with a fine comb. They are certainly relevant to our family symptoms and I have forwarded the info to my sister-in-law. I will investigate the Paleo diet - J is on fodmap and failsafe (no additives, low sals, low amines) at the moment.

Ant - the family has had a blood test for coeliac disease and all came up negative. I know there are issues with the accuracy of this however. He came up negative to fructose and lactose, yet definately responds better without these in his diet. So I don't place much faith in the tests........At the moment J is wheat free (has tiny amounts sometimes) but not gluten free. He has oat ad sourdough bread and porridge for breakfast. We could look to gluten down the track though.

Hi Gabe - I'm down in very cold, cold, cold Victoria (Mornington Peninsula). How's the sunshine up there? Nice to hear from you and thanks for all the encouragement.

Hi MaryBeth - Your info was really helpful. I shall ask about the Tryptase level, however I don't think it was tested. I'm very interested to see what my biomedic doctor has to say about the possibility of any mast cell issues - I don't see her until October.
I've yet to look at the Paleo diet, but the low histamine diet appears to be similar to what J is on now already. However I note that I'm giving him a fair amount of pumpkin at the moment and .....(something else, I've forgotten) and that is on the list to restrict. So I might try minimising that for a while. Certainly any foods with amines send him off the rails (esp aged meat). Mainly behavioural. He becomes very negative and can get very teary. Anxious about everything. He has trouble getting to the toilet - it's like he starts making vast amounts of urine and has no sense of needing to get to the toilet. Can get a bit oppositionaly defiant. Sometimes he'll get eczema (usually at the start of a behavioural reaction). He seems to only get tummy pains with fructose, sugar . Wheat gives him constipation. Raffinose diarrhea. I'm sure there is more, but that's all I can come up withnow! As I said, we are not really geting the bloating, tummy pain, constipation now that he's on fodmap. But it seems with sugar and amines and maybe too many salicylates he get's behavioural issues.
Thanks for asking. If any of this rings a bell, then I'd love to know!

[mbeezie]

I'm a fan of the FODMAP diet and read up on Failsafe early in my illness. Aged meats change histidine to histamine, so they are not allowed on the low histamine diet. The increased urine output can be a sign of a mast cell problem, especially for people like me who get spikes in blood pressure during a reaction. It happens to both me and my son. His anxiety really could be from high histamine - it's an "impending doom" feeling and I also get very anxious. I'm hoping you get things sorted out soon.

Mary Beth

[tex]

Peta,

Have you ever checked his blood pressure when he's having one of the "excessive urine production" episodes? I'm guessing that it will be significantly elevated, especially early on in the episode.

Incidentally, the way you replied is just fine. We don't have any "protocol police" here. We're here to learn about controlling digestive system diseases, and we don't get hung up on the formalities of proper posting procedures along the way.

Tex

[Gloria]

Mary Beth,

If meat is cooked and frozen within an hour or so, is it considered "aged?" I know the low histamine diet recommends fresh meat, but that's not always possible.

Gloria

[tex]

Obviously I'm not Mary Beth, so please forgive me for butting in here, because I'm interested in what she has to say on that, too. In the meantime, though, I'd like to throw out this thought - it's foods that are high in tyramine, that cause most of the problems, isn't it? With that in mind, whether or not meat becomes problematic may depend on the extent of drying that is caused by the freezing process. IOW, dried meats are high in tyramine.

Also, have you seen this list of foods that are known to be capable of triggering a non-immunological adverse reaction?

http://www.immunocapinvitrosight.com/di ... 27774.aspx

That list includes not only foods high in histamines, but many other non-IgE problem foods, (IOW, foods that cause problems while yielding negative IgE test results). I think that there is a problem with some of the foods for which aflatoxin is listed as the antagonist, though. I don't believe that all of those foods are normally subject to aflatoxin contamination, and aflatoxin is only part of the mycotoxin problem. Possibly the author confused aflatoxin with mycotoxin. Aflatoxin is only one of many mycotoxins that exist in the world. Corn, peanuts, milo, cottonseed, and sometimes soybeans, for example, are subject to aflatoxin contamination. Most of them, however, are also subject to other mycotoxins, such as zearalenone, fumonisin, vomitoxin, etc. The other foods for which aflatoxin is listed, should probably show mycotoxin, since the mycotoxins that affect them are more likely to be some mycotoxin other than aflatoxin.

Tex

[Gabes-Apg]

Peta

Lovely part of the world you reside in hope the bad weather over the weekend did not hit you too hard - up here we are having rain today and with that the summer humidity feels like it has started early!

any reaction to foods (change in behaviour, skin reaction, gas, bloating, change in poop etc) is a reaction and it is the body communicating that something is not right.

Diet wise that is great news that the digestion symptoms have improved.

i stick to a very plain eating plan with only small amount of actual ingredients, it took me a while to retrain my brain and taste buds that i didnt need to have something different each day. My meals are overcooked easy to digest type meals, and if i am in discomfort or overtired, i put the food through the food processor and make it like 'baby food' so that it is easier for my body to digest.

Depending on the ingredients your son reacts to, when i diagnosed with the MC and I wanted to be 100% Gluten Free, i was really surprised with the products that had hidden gluten and then as I eliminated yeast, soy, dairy there were so many products that had weird ingredients, some juices have vegetable gum in them for filler and texture, Sorbet that has pea protein in it!

The extra effort (and time) to figure out the diet and what works and what doesnt work is definately worth it.

good luck with the search. I am pleased Mary Beth replied as she has some great knowledge and insight on this subject.

[mbeezie]

I seem to remember reading that freezing slows the process, so frozen meat is Ok, but I wouldn't let it sit in the freezer for extended period. I buy meat for the week and use it up. Always look at freshness dates of meat and eggs. If an egg is watery, it is old. My son sometimes get pretty immediate symptoms from eggs (runny nose, sneezing, watery eyes). Use leftovers within a day. Fish is considered the worst - I think has a high histidine content. Histamine is a dose-response chemical, so there can be a cumulative effet, and that includes other causes of a rise in histamine, like seasonal allergies.

Interesting about the aflatoxin. I had an anaphylactoid reaction to peanuts and tested IgE negative. I know that lectins are known mast cell degranulators, meaning they cause mast cells to release histamine, which is why the paleo diet can help.

Mary Beth

[Peta]

Hi Gloria,

I've copied some info from the failsafe "fedup' website - it gives advice on how to keep amines in meat low. The advice regarding cooked meat and leftovers is further down. I hope this helps. Just recently I tried to relax how I was preparing meat for my son. I started browning some meat. I made a strong stock from the bones. I even gave him left overs once. I used frozen meat that was 4 weeks old. The result was disasterous for him. He was a complete mess. So I actually follow every guideline that is copied below.

hints for extra sensitive amine responders
eat meat as fresh as possible• fresh meat that has been hung by your butcher for a week or two is acceptable • supermarket meats are now vacuum packed for up to three months, avoid if possible.
Amines are more difficult to deal with than salicylates because amine content depends on the age and handling of the food. Amines are formed by the breakdown of protein or by fermentation.
Don't buy meat which looks or tastes old - the fresher the better. Cryovacced meat can be very high in amines. You will have to ask your supermarket or butcher which meat is cryovacced, and sometimes the answer will be "all of it".
Buy meat and cook it that day or freeze and use within 4 weeks, preferably less.
When meat is cooked, freeze leftovers and use within a week. If very sensitive, avoid leftovers.
Buy fish fresh (preferably within 12 hours of capture) and cook or freeze and use within two weeks or less and be wary of all seafood.
Cooking increases amines (only for amine containing foods, not for fruit like pears). Quick cooking methods are best - microwaving or steaming.
Browning increases amines (only in amine containing foods like meat, not flour products such as cakes and bread) - again, microwaving or steaming are best.
Use only fresh eggs.

I hope this helps,

Peta

[tex]

Mary Beth,

Just thinking out loud here. Given the fact that lectins act as mast cell degranulators, wouldn't D-mannose help to minimize that effect? (D-mannose, for anyone not familiar with it, is a mostly indigestible sugar that prevents lectins from attaching to cell walls, and causes them to be flushed harmlessly from the system . D-mannose is very effective for treating/preventing UTIs, for example, by preventing E. coli bacteria from attaching to the bladder wall).


Peta,

Here is why cryovaced meat is high in amines, (IMO):

One of the primary reasons why food causes some people to have unexpected reactions, and why "new" problems suddenly appear, from time to time, can probably be traced back to treatment processes approved by the USDA Food Safety and Inspection Service, (FSIS). And, most other countries' food inspection services almost certainly publish similar guidelines. Here, for example, is a list of "approved new technologies", that was published on August 24, 2004:

http://www.fsis.usda.gov/regulations/Ne ... /index.asp

Note this entry:

04-NT033

Cryovac North America

Cryovac Barrier Foam Tray/ LID551P Tray/Lid peelable barrier package with carbon monoxide as a component of a low oxygen modified atmosphere package (MAP) system.

IOW, those cryovaced foam trays contain an atmosphere of carbon monoxide, rather than air, or some other inert gas. Here's what they don't tell the consumer: The reason why carbon monoxide is used, is because it prevents spoiled meat from developing a characteristic green color when it goes out-of-date, and/or spoils. Instead, out-of-date meat packed this way appears to be a healthy red color, even though it may be spoiled. IMO, this is one of the worst treatments that USDA has ever approved, from a consumer standpoint. The processors and supermarkets love it, of course, because their products always look appealing, even after they're long out-of-date. As usual, caveat emptor.

Tex