Knowing 'No' is Knowing No More?

[drwex]

More un-wellness stuff. We cut because we care.


The blood test for celiac came back negative. That's totally unsurprising, and something of a relief as I've watched the sucktasticness of this disease in several of my friends. However, my doc doesn't have any other explanation for the oddities seen in my small intestine on the last round of X rays.


Sorry for the nasty mental image, but giardiasis has a symptomatology that matches to a good degree and the doc agreed that some people do have histamine reactions to this kind of infestation. Anyway, it's not a parasite.


The next step is definitely a GI specialist, which is currently scheduled for June something. Neither my doc nor I like that answer so we're going to try to get them to make it sooner. I give them until Friday to improve the situation, then I unleash Pygment on them.


Meanwhile I'm thinking a couple steps ahead. My current theory is a food allergy, possibly nightshades. Two questions for the assembled knowledge base. Google isn't giving me clear answers.
1. Is it possible to be allergic to wheat or gluten without having celiac disease?
2. Are some nightshades worse than others? Like, could I be allergic to eggplant but not tomatoes? Or might one nightshade provoke a worse reaction than others?

Comments

[coraline]

i believe the answer to both of those is yes, but that's based on some observation of people i know with allergies, and also on "it's the human immune system, just about anything is possible", not on research i can point you to, so it's probably not a very useful response.

good luck...

[drwex]

Thanks.

[tamidon.livejournal.com]

1. Is it possible to be allergic to wheat or gluten without having celiac disease?

Yes, there is an allergy to wheat that is not celiac.Wheat allergy sufferers can therefore eat oats,rye and other gluten containing ingredients.

[drwex]

Nod. I seem to recall you and I had a conversation about this back when Pygment was having problems with gluten. Thank you.

[tamidon.livejournal.com]

I didn't know celiac had a blood test,I thought a biopsy was required for a definitive answer

[catya.livejournal.com]

yeah, i got tested for it...

[(Anonymous)]

it's also the case that the blood test will sometimes give a false negative (confirmed by a celiac i know).
--desrt born, posting from work

[drwex]

All tests have some chance of a false negative. In this case I have observational evidence that would tend to disagree with a diagnosis of celiac, and my symptoms aren't well-matched to the disease profile. So I'm likely to take the negative blood test as a good result, though I'm sure the GI guy is going to order a retest.

[drwex]

I'm not familiar with the biopsy. The blood test has been around for a couple years. The Mayo Clinic page <http://www.mayoclinic.com/health/celiac-disease/ds00319/dsection=6> suggests the blood test for initial screen and biopsy for confirmation.

[aelf.livejournal.com]

When my daughter was failure-to-thriving, the bloodtest was explained to me just as the Mayo Clinic page explains it, you start there. Only do the (more invasive) biopsy if necessary.

[taura-g.livejournal.com]

To the best of my knowledge:
1. I believe so yes. I have heard of wheat allergies being outgrown. You can not outgrow Celiac's.

2. Most definitely. The different kinds are going to have different ratios of the "ingrediant" that you are specifically allergic too.

[catya.livejournal.com]

1 - yeah, as far as i know. i also know at least one person who is allergic to *yeast* rather than to wheat...

2 - I don't know anything about nightshades, but i would think so.

if you're strongly suspectig food allergies, there's the crazy elimination diet that molly et al did, which should be good for isolating them?

[drwex]

Yeah, I'm thinking the elimination diet is the end of the road. First step is just documenting what I'm eating prior to incidents. This time it was eggplant parm (two nightshades in there, but I also had cooked tomatoes in last night's meatballs-and-rice). Once I talk to the GI guy I'll probably head to an allergist as well.

[goddessfarmer.livejournal.com]

1. I don't know for sure, but probably.
2. Certainly. I have very strange allergies myself, that completely mystify the medical profession, but by not eating certain things, I stay healthy. I have various fruit allergies, and some species are much worse than others. Ditto nightshades - I can't eat a raw tomato, but well cooked is OK. On the other hand, Eggplant I can only eat a tiny bit of at a time and it must be cooked, and any kind of bell pepper is right out.

The best way to find correlations, and you've probably hear this before, is to keep a very detailed food diary. Every item, including beverages, every day, for a long time, recording along with the food, as much sensory detail as possible, including physical 'symptoms', emotional states, cravings, etc. And don't just assume that a 'symptom' on day x relates to food on day x, it might relate to food on day x-1 or x-2, or even certain combinations of foods eaten together or within certain time frames.

I know that this is frustrating and painful. The key is to do your homework, and eventually it will get figured out. Hang in there!

[drwex]

Thanks. I'm starting with simpler approaches and will move to more complex ones if the simpler don't give answers.

[feste-sylvain.livejournal.com]

Are some nightshades worse than others?

Yes. One member of the family is called "deadly nightshade", and it is distinguished from the only-mildly poisonous "purple nightshade" by the white flowers instead of purple.

As you dial down from those to things like potatoes, you get varying concentrations of all sorts of complex organic molecules.

Like, could I be allergic to eggplant but not tomatoes?

Yes. Or rather, your reaction to eggplant may be well underneath your radar, while tomatoes (for example) may cause you gastric distress.

Or might one nightshade provoke a worse reaction than others?

By now, you know the answer to that is "Duh!".

[drwex]

Interestingly I think my reaction might be to eggplant and NOT to tomatoes. Confusing as all get-out.

[kjc007.livejournal.com]

Eggplant makes my lips itch, while tomatoes do not have a noticeable effect on me.

So it could easily be a higher sensitivity to one than the other.

[drwex]

Thanks, it's good to have more data points.

[sykotropic.livejournal.com]

The answer as previous people have said about wheat is yes. A resounding yes. That is exactly my situation. I am allergic to (as I think I've previously mentioned) to wheat, egg whites, dairy, and mold(and hazelnuts and cashews too). My diagnosis found by using three methods. First, I did the traditional scratch tests. The scratch tests identified a low level dairy allergy and a high level mold allergy (as well as high level ragweed, which meant that any echinacea products are out cuz they are relatives) . This helped, but didn't "cure" me. So I went to my GP (because my allergist didn't believe that the RAST test was at all useful) for a blood draw. The blood test identified wheat, egg whites, dairy and the nuts. I confirmed the blood test diagnosis through an elimination diet. I highly recommend the elimination diet.

In terms of wheat allergy and eating other glutinous products. You might find that some are more ok than others. I, for one, can not eat oatmeal, but can eat oatmeal raisin cookies (go figure).

Good luck as you go through this process of diagnosis.

[lindalee.livejournal.com]

high level ragweed, which meant that any echinacea products are out cuz they are relatives

You know, I've heard other people assert this...but I have an absolutely horrific ragweed allergy, and never any problems whatsoever with echinacea (not in consuming it, not in growing it in my garden).

[drwex]

My experience matches that of lindalee - I have a high level of ragweed allergy, particularly during pollen season, but echinacea has never provoked a reaction in me.

Thanks for the good wishes.

[mrw42.livejournal.com]

Well, knowing it isn't celiac disease certainly seems like good news!

BTW, I know a couple of people who are allergic to wheat who can eat other items that contain gluten.

I also know at least one person who is allergic to tomatoes who eats eggplant.

Has your doctor suggested seeing an allergist? If you can't get in to see the GI specialist right away, maybe you should try pursuing the food allergy avenue?

[drwex]

Yes, we've agreed that an allergist is on the treatment roadmap. However, there are still a number of things that can provoke a histamine reaction that are not allergies. I'd like to rule those out as much as possible so I'm not just treating a symptom.

[donnad.livejournal.com]

1. Yes, I can't eat durum wheat, makes me sick to my stomach.

2. Yes, I have bad reactions to eggplant, potato and tobacco, and much less reaction to tomatoes.

Good luck getting it figured out.

[drwex]

Thanks, I appreciate the data point.

[kimberlogic.livejournal.com]

*hugs*

Folks have pretty much already said much of what I was going to add. I do hope that you're able to see the specialist much sooner. Hang in there. *hugs*