Does This Sound Right To You...

[ECD]

So I went to see an allergist today in order to get tested. He looked in my ears and throat, asked me a couple of questions but didn't seem to listen to the answers. He was a bit more preoccupied with an unrelated condition that I've managed since childhood (reynaud's if anyone cares). He promptly told me that it wasn't an allergic reaction which shocked me since I was told to see him because my college nurse believed i suffer from multiple food allergies. Now, I don't particularly care if it's an allergy or celiac disease or ebola, I just want to know so that i can start getting better. I pointedly asked him if certain symptoms were allergic reactions and he flatly told me no, and then proceeded to describe anaphylaxis to me and basically said if i had a food allergy then I would be dead by now. he told me to keep a food diary for two weeks and then i could mail it to him and his nurse would look over it and get back to me if they thought i should be tested for anything. i asked him to test me for penicillin, as i was supposed to be tested years ago, but he dismissed that too.

So here are the symptoms I described (or tried to describe when i wasn't being interrupted):

Swelling of the eyelids,

Mild swelling on the tongue

itchy or burning lips

scratchy throat

sore throat

feeling of something being stuck in throat

gagging/choking on food

trouble swallowing

shortness of breath

vomiting (just a once or twice)

acid reflux

coughing

post nasal drip

stuffy nose

runny nose

watery eyes

itchy eyes

swollen cheeks

feeling my food go from mouth to my stomach (i don't even know if this is normal or not, but i can feel my food go down my throat, if that makes any sense)

stomach cramps

nausea

bloating

diarrhea (only a couple of times)

dizzyness to the point of blacking out

rapid heartbeat

itchy skin

hives (but only twice)

joint pain (it's not arthritis or lupus - the doctors have basically said it's just growing pains. i've had them for seven years. i'm 23 and female. i haven't grown in a decade)

i was so upset that i went home and cried. how can it not be an allergy if benadryl makes it better? the thing is, i really don't know what causes it and the symptoms aren't always the same. sometimes they are bad, sometimes not. sometimes it's just one or two and twice it's been all of them. i should just have gone to the hospital, but my tongue was making it hard to talk and i couldn't stand up long enough without blacking out anyway. my head was fuzzy and i couldn't figure out how to ask someone. i mean, i literally couldn't figure out how to say the words "i need to go to the er". it was weird. i managed to take three benadryl and that cleared things up for the most part. then about seven hours later the symptoms came back plus hives so i took another dose and went to sleep. i'm so thankful that nothing more serious happened.

should i see a different doctor or stick with this guy? i'm sure he knows what he's doing, but his dismissiveness upset me- especially when i thought i would finally get answers today. i'm keeping the food diary like he told me, but my mom is calling some other allergists near her. unfortunately, this guy is the only allergist where i live. it'd probably be faster and easier to just stay with him, but do you think he knows what he's doing or even cares? i feel so dumb for thinking my symptoms are even a problem.

*edit: he also didn't ask for a family history. as a side note, both parents, a sister and a half sister have moderate to severe allergies, though not to food. my mom is moderately allergic to cats and bean plants, sisters both have seasonal allergies, and dad is deathly allergic to bee stings and severely allergic to shumac and poison ivy/oak.

[ShayFL]

Yes. Find anothere doctor. Geez......

[RiceGuy]

One sign of trouble which you didn't specify directly, is not having grown since age 13. Though not conclusive in itself, it's still a big one for Celiac.

I may be biased against the entire medical industry, but I do believe you should ditch that so-called doctor.

What jumps out at me is all the symptoms which are indicative of an intestinal yeast overgrowth (aka candida). The brain fog type symptoms, puffy eyelids, itchy eyes, scratchy throat, itchy or burning lips, runny nose, watery eyes, nausea, dizziness, hives, and even joint pain. This may actually be causing or worsening the Raynaud's, because the yeast+Celiac makes it all-the-more difficult to absorb nutrients. The first supplements I'd suggest for Raynaud's are magnesium and B12, and possibly zinc. However, you first need to address the candida issue, if indeed that is a problem. The best advice I know of is to avoid all sugars, yeasts, vinegars, and fruits, and take a candida fighter such as Open Original Shared Link, and/or Open Original Shared Link. You should notice a difference in as soon as a day or so, but find real improvement in a few weeks or so. Even if candida isn't an issue for you, those supplements still shouldn't do any harm (unless you're allergic to them). I think I'd also suggest a good probiotic. Do make certain it's gluten-free of course. The members of this board will have some decent recommendations for you on that.

Since you didn't specify, I'll ask: Are you following a gluten-free diet? Have you pursued any testing for it, and if so what was the conclusion?

[AliB]

Stupid man - get another doctor.

Not everyone who has an allergic reaction ends up with anaphylactic shock! You can have a mild allergic reaction. It seems as though you may also be intolerant of some foods too which is not the same as an allergic reaction but can be just as debilitating.

You didn't specify which of those symptoms you get when you have an allergic reaction and which are just general issues with food.

The swallowing problems are almost certainly due to Candida or other yeast infestation. Typically certain foods seem to get stuck in the throat, particularly carbohydrate based foods. The sore throat is a sure sign that your poor body is desperately trying to off-load toxins. The tonsils are a window to the general health of the body and if they are inflamed then the body is struggling.

The food reactions are likely to be due to 'leaky gut' allowing undigested particles through into the bloodstream. You need to get on to a healing diet. Many of us are gaining relief from the Specific Carbohydrate Diet which is extremely beneficial for many health issues including stomach and gut problems, even neurological.

There is a thread on this section if you want to know more, or have a look at the 'breaking the vicious cycle' and 'Pecanbread' websites for more info. There are also SCD recipe sites as well. So many of us have been where you are now and have learnt that the Medical Profession have little or no understanding of food intolerances or what to do about them.

The brilliant thing about the SCD is that for most people eventually the body heals and they can live then with little or no problems with food as long as they do not revert back to the constant consumption of the very damaging high-carb, high-sugar 'Western' diet.

[MaryJones2]

You should never leave a physician's office in tears (or cry when you get home). Please think about finding a new one with a little more compassion.

[lizard00]

I'll add my vote for find another one. I have an egg allergy, but I can eat them without dying. They make my stomach burn for a couple hours and give me a headache, it's very uncomfortable, but I certainly don't end up in anaphylactic shock.

It really sounds like you need to be seen by a GI anyway. Is there one in your area that you could be referred to? As Riceguy said, the fact that you haven't grown since 13 should send a red flag to most doctors.

It would appear to me, and this is just my opinion, that you could likely have Celiac with food allergies. Which is not at all uncommon...

and Reynaud's is not as unrelated as you'd think. Just do a search on celiac+reynauds.

[jerseyangel]

I'm so sorry you were treated this way. I know what it's like to have high hopes when seeing a new doctor for the first time, only to feel even worse after the appointment

Definately consider seeing a GI and if you decide to go back to an allergist, find a new one. There are wonderful allergists out there who will listen and who understand food intolerance. When you make the appointment, ask if the doctor treats patients with food intolerance--I did this and was surprised to find out that not all do. One office flatly told me "no".

A good GI is invaluable--the one I see now (my third) is well informed and very thorough. I have several other food intolerances besides gluten which she took very seriously. After much testing, I'm being treated for another condition that is associated with Celiac; halfway through treatment I'm doing much better. I haven't challenged any of my problem foods yet, but hopefully we're on the right track.

Looking at your symptoms, I would suggest having the Celiac Blood Panel run. It's an excellent place to start. It consists of these tests, and it's important for you to remain on a full gluten diet up to the tests. This is the complete panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

I had the food sticking in my throat, too. Turns out that, for me, it was a Celiac symptom. It resolved soon after going gluten-free. It's not unusual for untreated Celiac to exacerbate sinus problems. For years, I was treated for sinus/allergies when the real issue remained undiagnosed.

Best of luck!

[ECD]

Thank you all so much for being lovely! I'm seeing another allergist near my parent's house in a week and a half. My mother was a little concerned that, even after I specifically mentioned gluten being a problem and milk, the doctor didn't test those.

Originally, I was having some problems that didn't seem too allergy related - joint pain, itchy eyelids, stomach cramps, bloating, diarrhea (very rarely), etc. My school doctor (a nice man who volunteers at my college a few days a week) actually suggested that it might be celiac disease or gluten intolerance - i wound up in the e.r. once because of bruising caused by malnutrition or malabsorption. The doctors ran a blood count but left it at that at basically just diagnosed it as contusions. Anyway, my school doc. said to try not eating gluten for a bit. I cut it out and noticed great improvement in just a few days. Almost all of my symptoms were gone. Unfortunately, when I went gluten-free, I also completely changed most of what I normally eat. I was basically eating fruits, vegetables, rice, and some gluten-free snacks. Then, at a restaurant, I had a terrible reaction to some mexican food that was supposedly gluten free. I went back to the doctor and he said it sounded like food allergies and I needed to get tests done. At that point, I started eating gluten again. The weird thing is that after a month or two of gluten-free (which isn't that long) my reactions to it and other foods seem to have changed.

Either way, I know for sure that I felt better eating gluten free, so I'm going to ask the doctor to test for that too. I'm not exactly enthused about the idea of an intestinal biopsy, though. Do you have to get that done and can the allergist run the blood panel... or send it away or whatever?

Also, I probably exaggerated a bit when I said I haven't grown since 13. At 13 I was 5' 2", and I'm now a towering 5' 3.5". I can't ever remembering having a growth spurt. Is that a celiac thing too? I'm shorter than all of my siblings by a a good bit, but taller than my mom. However, I think my mom has a lot of undiagnosed health issues. I tried explaining the link between celiac disease and things like rheumatoid arthritis (which she has), but she didn't seem interested. If i have it, then I'll probably use that as a reason for her to get tested, too

That's so interesting about the yeast thing - I had chronic yeast infections when I was younger that lasted on and off for a while. And when I gag on food it's almost always bread. And never the first bite. weird.

Thanks again, I'm going to look at all the helpful links and diets. I'll let you know how the testing goes.

[ang1e0251]

I'm so glad to hear you are changing doctors. No one should be condescended to or dismissed out of hand. You may not agree with what I have to say but you should have the common courtesy to hear me out, after all, Dr. , you are the expert & I a layman. I respected you enough to come to you for answers not double talk.

I have had most of the symptoms you described clear up with a gluten-free diet. I started the diet to try & heal a rash but was shocked when so many other seemingly unrelated symptoms went out the window! How lucky you are to find this out at a young age! My Mom also dismisses my saying she might benefit from the diet. I also have had chronic yeast infections for 30 years. Now I only have 1-2 per year. So I think your school dr. is right on. You should pin a giant thank you note up on his waiting room wall.

[ravenwoodglass]

Thank you all so much for being lovely! I'm seeing another allergist near my parent's house in a week and a half. My mother was a little concerned that, even after I specifically mentioned gluten being a problem and milk, the doctor didn't test those.

Originally, I was having some problems that didn't seem too allergy related - joint pain, itchy eyelids, stomach cramps, bloating, diarrhea (very rarely), etc. My school doctor (a nice man who volunteers at my college a few days a week) actually suggested that it might be celiac disease or gluten intolerance - i wound up in the e.r. once because of bruising caused by malnutrition or malabsorption. The doctors ran a blood count but left it at that at basically just diagnosed it as contusions. Anyway, my school doc. said to try not eating gluten for a bit. I cut it out and noticed great improvement in just a few days. Almost all of my symptoms were gone. Unfortunately, when I went gluten-free, I also completely changed most of what I normally eat. I was basically eating fruits, vegetables, rice, and some gluten-free snacks. Then, at a restaurant, I had a terrible reaction to some mexican food that was supposedly gluten free. I went back to the doctor and he said it sounded like food allergies and I needed to get tests done. At that point, I started eating gluten again. The weird thing is that after a month or two of gluten-free (which isn't that long) my reactions to it and other foods seem to have changed.

Either way, I know for sure that I felt better eating gluten free, so I'm going to ask the doctor to test for that too. I'm not exactly enthused about the idea of an intestinal biopsy, though. Do you have to get that done and can the allergist run the blood panel... or send it away or whatever?

Also, I probably exaggerated a bit when I said I haven't grown since 13. At 13 I was 5' 2", and I'm now a towering 5' 3.5". I can't ever remembering having a growth spurt. Is that a celiac thing too? I'm shorter than all of my siblings by a a good bit, but taller than my mom. However, I think my mom has a lot of undiagnosed health issues. I tried explaining the link between celiac disease and things like rheumatoid arthritis (which she has), but she didn't seem interested. If i have it, then I'll probably use that as a reason for her to get tested, too

That's so interesting about the yeast thing - I had chronic yeast infections when I was younger that lasted on and off for a while. And when I gag on food it's almost always bread. And never the first bite. weird.

Thanks again, I'm going to look at all the helpful links and diets. I'll let you know how the testing goes.

One thing to keep in mind also is that celiac can send the immune system into hyperdrive but gluten intolerance and celiac are not allergies. Most allergists are unfamiliar with intolerances and only deal with 'true' allergies that cause a histamine reaction. Hopefully the allergist you will soon be seeing is one who can assist you with an elimination diet if needed. Any doctor can order a celiac panel but you do need to be on a full gluten diet for that panel to have any chance of being positive. Both blood and endo's have false negatives so do try the diet after you have finished any testing you need to have done. I hope you have a productive visit with the allergist but if you don't and want to find a new one when you call ask if they can help with elimination diets and food intolerances as well as allergies. I had to make a lot of calls before I found one who did but for me the allergist was a life saver, literally. If you are found to have celiac all first degree relatives should be tested.

[AliB]

Originally, I was having some problems that didn't seem too allergy related - joint pain, itchy eyelids, stomach cramps, bloating, diarrhea (very rarely), etc.

All these things can be linked to food intolerances. Very often an overgrowth of certain bacteria within the body will set off toxic reactions to some foods. All bacteria give off by-products as part of their digestive process and some by-products can be damaging and affect any area of the body. Those 'rogue' bacteria may be perfectly ok in small amounts but when they get out of hand they become problematic, like the effects of Candida infestation for instance.

My school doctor (a nice man who volunteers at my college a few days a week) actually suggested that it might be celiac disease or gluten intolerance - i wound up in the e.r. once because of bruising caused by malnutrition or malabsorption. The doctors ran a blood count but left it at that at basically just diagnosed it as contusions. Anyway, my school doc. said to try not eating gluten for a bit. I cut it out and noticed great improvement in just a few days. Almost all of my symptoms were gone. Unfortunately, when I went gluten-free, I also completely changed most of what I normally eat. I was basically eating fruits, vegetables, rice, and some gluten-free snacks. Then, at a restaurant, I had a terrible reaction to some mexican food that was supposedly gluten free. I went back to the doctor and he said it sounded like food allergies and I needed to get tests done. At that point, I started eating gluten again. The weird thing is that after a month or two of gluten-free (which isn't that long) my reactions to it and other foods seem to have changed.

My take on this is that I believe that when we withdraw certain foods from the diet we are depriving the bacteria of their food source. Some will die back as a result, but others that may be more adaptive will just transfer to a different food source - hence the reason that a lot find when the go gluten free they either have, or start to have problems with other foods, usually carbohydrates. Most gluten-free baked goods are actually higher in carbs than gluten foods and are also often liberally laced with sugar.

It may be that the bacteria that were using the gluten as food had died back and you could then eat gluten again without too much problem, however, if you continued to eat it you may well find that eventually after a few days or weeks the problem would come back as the bacteria starts to re-populate and the toxic by-product level starts to increase again.

Either way, I know for sure that I felt better eating gluten free, so I'm going to ask the doctor to test for that too. I'm not exactly enthused about the idea of an intestinal biopsy, though. Do you have to get that done and can the allergist run the blood panel... or send it away or whatever?

Sometimes, if the blood test shows a definitive positive and you have a good doctor, they may not insist on a biopsy. Although at the moment biopsy is considered the 'gold standard' of testing, as it is a very invasive process it would be nice to think that they may come up with a better system eventually. I'm not sure that gut damage doesn't occur in people who do not have celiac, simply due to rogue bacterial or parasitic activity. Some of those little beggars can be very damaging.

Also, I probably exaggerated a bit when I said I haven't grown since 13. At 13 I was 5' 2", and I'm now a towering 5' 3.5". I can't ever remembering having a growth spurt. Is that a celiac thing too? I'm shorter than all of my siblings by a a good bit, but taller than my mom. However, I think my mom has a lot of undiagnosed health issues. I tried explaining the link between celiac disease and things like rheumatoid arthritis (which she has), but she didn't seem interested. If i have it, then I'll probably use that as a reason for her to get tested, too

If you have an imbalance in your gut flora then it is almost definite that your Mum has too. Families are by nature get very 'up close and personal' with each other, sharing virtually everything, using the same toilets, sneezing all over each other - well they share their bacteria with each other too. If your Mum has always had poor gut flora then she would not have had strong flora to pass on to you as a baby. Similar health issues often follow through the generations. Yet even then there may be differences. We are all individual, so the way your body copes with a certain bacteria may be different to the way your Mum, or Dad, or your siblings do. Although the main health issues can be different, what is often the same is the gut issues.

Short stature may well be due to deficiencies. Some bacteria are avid consumers of our vital nutrients. So deficiencies within the body may well indicate bacterial imbalance. One way you can tell if it bacteria is if, as some have found, you find yourself having to increase any nutrient. Some find that they are, say, deficient in iron. They start to take the iron but after a while they are still deficient and then have to increase the dose. What they are actually doing is making the bacteria stronger by feeding it! Only by getting it under control by diet and other means will our bodies then be able to utilise the nutrients properly.

That's so interesting about the yeast thing - I had chronic yeast infections when I was younger that lasted on and off for a while. And when I gag on food it's almost always bread. And never the first bite. weird.

Thanks again, I'm going to look at all the helpful links and diets. I'll let you know how the testing goes.

Yeast is obviously a problem for you - the thing with yeast is that when it is in its fungal form it is often obvious in the form of thrush or athlete's foot or dandruff. The danger lies when it turns into the mycelial form. It then becomes a 'silent' invader putting out its feelers, penetrating the gut wall and invariably ending up in any area of the body where it will quietly do its dirty work. It's like internal Dry Rot. The fact that you don't appear to have any external yeast infections does not mean that it isn't still a major problem. That is where the Specific Carbohydrate Diet is good because it removes from the diet the foods that feed the Candida giving your body a chance to claw itself back from the 'beast'. Your Mum's RA may well be linked to gut flora issues, especially if she also suffers with any gut or stomach problems.

[ECD]

I just wanted to give you all an update because you were all so sweet and helpful! My new doctor is absolutely wonderful - she worked with me for about two hours (only twenty minutes of which was the actual allergy test, the rest was just talking and asking questions). I've never had such an indepth discussion with a doctor. She tested me for all of the food allergens I thought might be an issue, plus some that she suspected, but none of them were positive. She also drew blood to run a celiac panel. unfortunately, i misunderstood one of her questions and i think i have to get retested for food allergies. apparently, if you have anaphylaxis five or six weeks prior to skin testing, you'll get false negatives. i'm not so sure i have allergies, but she likes to be safe, so she'll probably retest when i see her in a couple of weeks. i now have an epi-pen for severe attacks, plus some other medicine to help with day to day symptoms like stuffy nose and nausea (which for me turns out to be a weird, unrelated, non-allergy thing). she said if it wasn't an allergy, then it might be idiopathic (or something), but either way an epi-pen is the way to go. evidently, i've had at least 3 anaphylactic shock episode things. scary stuff!

on a side note, i'm actually a bit nervous to get my celiac results! part of me wants it to be positive so i know why i feel so bad so often, and part of me wants it to be negative so i can eat whatever i want like a little piggy!