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CLL Support Association
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To many allergies!!!!

Allergies sick of them!!!! I don't know if anyone is having problems with their allergies. I am allergic to all dairy, eggs, almond milk , all oils and even avocado. I think I might start eating BUGS. My weight is at 104 right now any suggestions for a substitute for oils.

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I use coconut oil. For some reason my allergies are also bad this time of year.

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Oh, no! Not Avocados! That's one I've never heard of. I have a bad time with chemical smells, perfumes, tobacco smoke, but fortunately did not inherit my mother's food allergies. I am lactate intolerant, but to milk only. I can eat other dairy products - go figure. Has your doctor had you try different things one at a time? As sick as I got before the lactose intolerance was diagnosed - and milk was the one thing that appealed to me making things worse - I never would have imagined that I would ever eat any dairy product again. How totally frustrating. I'm trying to think of what's left. I suppose there are still choices, but that you will have to rethink your whole eating pattern. Do you have access to a good neutricionalist to help you?

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Yes I am seeing one now. I was eating eggs everyday and they tested me for that and I was highly allergic. I love eggs! I can eat organic meat, vegetables and fruits.

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Are these allergies or severe intolerance? As I understand it, an allergy is usually reckoned to bring on anaphylactic shock (e.g. I have a friend with a peanut allergy whose throat will swell to the point of cutting off breath), whereas an intolerance has various effects.

I'm highly intolerant to cow dairy, but now use goat dairy instead (milk/cheese/yoghurt), to which I have no reaction at all. I also react to penicillin by coming out in a full-body rash. Although I tend to say to medics "I'm allergic to penicillin", I'm aware that this isn't strictly accurate!

Also, after a bout of pneumonia and a range of antibiotics in hospital (the initial ones causing severe vomiting, so ceased) my hay fever all but vanished. I have *no idea why* and it might be coincidence, unless I was carrying an infection that caused the allergy.

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I have severe intolerance and several allergies. I get nasal congestion, asthma and classical migraines. My IGA ,IGG and IGM are low. I just wondered if everyone is having intolerances and not even knowing it because of our low immunoglobulins. Thanks

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Perhaps you need to talk to your haematologist about augmentation of your IgG levels. Monthly infusions have made a big different to some patients.

While IgA and IgM can't be added to, the IgG does some of the work of the other two...

There is a new weekly subcutaneous version available, that you can do at home, and it is proving to be quite good in CLL ...

~chris

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Thank you for that information.

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Substitute for oil - that is tough! I know a lot of low fat chefs have you saute in water. I never found that to work great, though. You could save the fat after cooking things like bacon to use like cooking oil. My mom used to do that.

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That's a great idea. I am going to try the bacon oil.

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I used to have severe reactions, including very bad sinus infections, to orange blossoms and any plant (jasmine for example) with what to me were stinky white flowers. I realized one day, after getting IVIG for some time, that I was standing next to a row of blooming orange trees with no reaction. I don't know if the IVIG is the reason, but I no longer have that problem.

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Wow! I t is great to get all this input on allergies.

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I think food problems need careful science for which many people simply do not have patience.

It took me 50 years to realize that my body takes several days to digest (confirmed by gastric emptying test), and to pay specific attention to the often vague symptoms. The body is wired oddly. Why would a gall bladder problem cause pain between the shoulder blades? So where it hurts may not always be where the problem is.

The digestive system also really varies a lot chemically - from alkaline in the mouth to acidic in the stomach and back to alkaline in the intestines - and those levels vary depending on time of day, what you eat, anxiety, depression, and medications you take.

Burning in the mouth - is it just hot peppers, or an allergic reaction? Allergy usually causes swelling, plus itching around the mouth. Coeliac disease, on the other hand is not an allergy - it's an autoimmune disease triggered by some proteins in wheat gluten. Hot peppers can cause inflammation of damaged mucus layers.

Gas is usually produced by microbes that ferment foods - and there's different places that are favored by different species. But gas can also be swallowed air or CO2 from soft drinks or beer. Everyone has different combinations of species, so foods affect different people in different ways.

Belching - gas in the stomach can come up from small intestines. Usually, the acid in the stomach keeps microbes in the top end of the small intestine low. But further down, we actually need some of those microbes to extract more nutrients from food for us. Long term antacid use, or possibly necessary antibiotic use can change the amount and species of bacteria in the small intestine, and lead to a methane party. A few people have even gotten drunk from ethanols from fermentation.

Bloating - gas in small intestine - and possible stomach and large intestine as well. It gives that overly full feeling, and may even be painful.

Flatulence - gas in the large intestine. If you eat beans, gas often results. There are over the counter products that can reduce it, such as Beano. It also works with other foods, like broccoli.

Gas can produce sharp pains in the intestine if spasms result fromreally stretching the . Or there can be dull pains - often where one segment connects to the next - stomach to small intestine, small to large.

Nausea can be intense or vague. It can emanate from the stomach, or lower. Both males and femails can get nauseous with gonad trouble.

Nausea can be learned, and it can be cultural - just the thought of some food combinations can disgust one person, and leave another salivating.

I finally realized that what I ate just now or even last night might not be what causes bloating, pain, or nausea that just started. The tool I used was a baseline diet, a food diary, and testings strategy - aided by a dietitian. I found that white bread was not much problem, but whole wheat or wheat bran were major problems. A lot of the fried foods that made me think it was the oil were in fact what was being fried. Fried onions - awful. Fried shrimp, no problem. On the other hand, too much olive oil on a salad still leaves me nauseous, but most others have no problem. Cod liver oil is terrible for me.

The science of digestion is in its infancy. Scientists do not know all the enzymes, endocrine, paracrine, autocrine, and other chemical signals involved. They do not know how the hundreds of species of bacteria and fungi, as well as probably thousands of different viruses in the intestines interact with each other or with the body's tissues, enzymes, and immune system.

Oh, and the small intestines are lined with more nerve cells than a cat's brain - and those cells interact with what you eat, your immune system, hormones, etc, and your brain. They call it the Enteric Nervous System, or Gut Brain. Those nerve cells learn, too, and can operate totally independently of the brain. The small intestines are also the place where the most lymph nodes cluster - and for good reason. The immune system and the enteric nervous system both learn about what you eat. Sometimes one or both learn incorrectly.

So what works for one person may not work for another. There's no reliable product for everyone. Simplify the diet to get a baseline (and really boring) diet you can stay on for 3 days between challenges of a single food item at a single meal. Be prepared for some surprises. Forget all the marketing of specialty whatever-free, or whatever-added "health" food fad. Be prepared for problems with fresh food that do not occur with the same food when it is cooked - and I suspect, even vice versa. Organic veggies have significantly more active bacteria and fungi - wash them well. Organic meats may be better because of the whole food processing chain - not just lack of antibiotics or hormones. Avoid raw milk. Species of wheat or maize could make a difference to some people. Keep a diary. Make notes. Be a scientist.

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Thanks for this, SeymourB. It's given me a lot to think about...

Paula

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My pleasure, Paula.

If you have IBS (irritable bowel syndrome), you may find it tends toward diarrhea (IBS-D) or constipation (IBS-C), or even alternates (depending on what you eat). See a gastroenterologist for a proper diagnosis. Ask if they have a dietitian on staff to work with (a motivator, in my opinion).

You may find that high calcium foods and antacids like Tums, which have calcium, tend toward constipation. If you are also taking a PPI (Proton Pump Inhibitor), it will prevent magnesium digestion. So you could add Philips tablets or liquid.

On the other hand, if you tend toward diarrhea, you could have too much fiber or fiber of the wrong type. You may find that prebiotics, like inulin (chicory root) tend to diarrhea, bloating and gas. So, reading labels is important.

Focus on the symptoms, and check out respected university and scientific web pages on IBS. If you want to experiment with prebiotics and probiotics, try to add only one at a time and wait 3 days for the end to end. It might be 2 days for you, but the extra day lets the gut heal a little if it the substance caused problems.

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Thank you Seymour. That's very helpful. I've had repeated digestive/gut problems for quite a while now, and need to get things sorted out - or at least better understood.

Paula

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Excellent Seymour!

One thing I wanted to mention, if you are in the semi-colon club as I am... much faster throughput... higher acidity... and less gas...

Interestingly...chewing gum gets things moving...rather rapidly as well... 😆

~chris

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Is it gum with polyols - sugar alcohols, like mannitol, sorbitol, maltitol (anything ending in OL)?

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Any chewing gum starts the saliva/digestive process we were informed at the colon.. 'teach sessions'... its the chewing action... the gum I used is Aspartame free... less cancer potential... 😀

It does contain xylitol, glycerol and tocopherols... as well as carnauba wax, for that just polished new car look... 🚗

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Thank you for all that information!!!

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Thanks Seymour so informative.

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Have you tried taking digestive enzymes and HCL with each meal? These can help with digestion issues. Many people are actually low in stomach acid and think they are high due to acid reflux or other symptoms. I believe you can test your HCL.

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Not sure how you can test your stomach hydrochloric acid (HCl) other than by direct sampling. It used to be done by lowering a naso-gastric tube into the stomach with a pH sensor at the end, clipping the recorder onto your belt and wearing it for 24 hours...

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I have indeed tried some digestive enzymes, most recently 600 GALU alpha-galactoxidase (Beano). That has helped a little with nausea and belching from broccoli, some with garlic, and not at all with onion. I would not say it has fixed anything, though.

I've heard of expensive radio pills that you swallow that test the whole path. I've also heard of baking soda tests that say that if you don't burp within a minute or two, your acid is low. I haven't found any academic references to validate that test, though. I'd welcome one, especially if it's not associated with a web site trying to market something.

A growing number of science professionals suspect that Proton Pump Inhibitors, such as omeprazole (Prilosec OTC), and H2 blockers, such as ranitidine (Zantac) lower stomach acid too much. The dosages are one-size-fits-all. From what I've read. acidity varies a lot, and needs to be high enough that it kills pathogens, but not so high that it injures the body:

news.ncsu.edu/2015/07/beasl...

the

GERD therapy has known about side effects these druges for a long time.

med.umich.edu/1info/FHP/pra...

But patients want precision medicine that simply does not exist, either from big pharma or the nutraceutical industry. As a GERD and IBS patient, I know what happens when I discontinue omeprazole or ranitidine - it can even lead to hospitalization.

I would mention, though, that Ranitidine has the advantage that it is a tablet that you can cut into halves or quarters. Only omeprazole magnesium, and not plain omeprazele, can be adjusted by cutting the capsule. It's messy. Ranitidine is something you take before a meal - so you can adjust based on known meal contents or how anxious your are. Omeprazole takes awhile, and does not tend toward a precision does.

Food trigger avoidance seems to be one of the best, though least fun choices to make. I live in New Orleans. I cannot eat the food that my spanish-french creole grandmother cooked and ate. I blame my dad. He was from dutch-german stock from Milwaukee. ;^) But, my brothers don't suffer as much. So there has to be some other variables.

=seymour=

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Thanks, Seymour! Lots to "digest".

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