Is (Decaf) Coffee A Problem For Anyone Else?

[vegan lisa]

I've been trying to sort out my issues for about a year. My celiac blood work was negative (I don't have a copy, but I know they tested for 3 things, not sure what "negative" means) and I had an endo that showed "no evidence of villus blunting" but did show "impressive" inflammation. My main troublesome symptoms are stomach pain and weight loss, with occasional digestive difficulties (neon orange D, urgency).

So about 6 weeks ago I was abandoned by my GI, who said "you don't have any of the illness which I treat". I'm not totally confident in her knowledge or skills, and not confident that did the biopsy correctly or that it was read correctly. Same for the blood work. So I decided to take matters into my own hands and I started an elimination diet. I'm avoiding gluten, coffee, and apples (all suspect). I felt better than I had in a long time and had no pain. I had one slip up with oats while traveling, and had horrible fatigue, orange D, and pain for 3 or 4 days.

Then last weekend I had a cup of decaf coffee on Friday and the stomach pain returned. On Saturday, I made gluten free chocolate-mocha cookies and ate a lot of them and then ate oats (dinner at a friend's house, I was being "polite"... won't do that again). I know, bad science!

The misery I have been in since then is nearly keeping me home from work. I've had incredible fatigue again (sleeping 11+ hours, taking naps, woozy and having brain fatigue, also dizzy spells) and terrible stomach pain, which was constant on Sunday, but now recurrs every time I eat anything. The pain passes after a bit, but every meal is hard to digest.

This is no long sounding like celiac to me. The endo showed no H-pylori or ulcer type damage. Any ideas from you all? I'm desperate for help, and don't really know where to go.

I'm back on my old elimination diet, and hopefully will feel better again any minute.

Thanks for your suggestions and support...

Lisa

[mushroom]

Hi Lisa, and welcome.

I am sorry you are having such problems, both with diagnosis and with diet. Do have faith that it will all work out in the end, because the beginnings are often complicated.

It sound like they did not run the full celiac panel if they did only three tests. That means they probably did not run the "control" test for total serum IGA to see if you actually produce antibodies. If this test was run and results were below range it would invalidate the findings of the other tests. 'Negative' means that you did not score high enough for them to diagnose you. A common range for negative blood work is 1-20 in some labs, so a 19 would be negative and a 21 technically positive, although some doctors would call that 'borderline' Now that being said, a false negative result is common - in fact occurs in about 20% of cases. The upper endoscopy is the 'gold standard' test to check for damage to the villi. Generally speaking, inflammation in the upper intestine is often the precursor to villous blunting, and you say yours was 'impressive'. That means that something is seriously upsetting your GI tract, and on the page I am reading that something is most likely gluten. And since they sample only a few areas, and damage can be patchy, they may have missed it.

If you originally felt better without gluten (and oats - many celiacs cannot eat even certified gluten free oats) - then I would definitely keep at it. Totally avoid the oats (and the coffee for now), do your elimination diet and add things in slowly and I think you will get better. It may not seem like it now, but when we go gluten free we often have a stronger and longer-lasting reaction to gluten if it is reintroduced.

Call your GI's office and get a copy of the results of both tests - you are entitled to them and they might be elucidative. Feel free to post your results and ranges here - we have some folks on the board who are very good at interpreting these.

Stay the course, and feel better soon

[VitaminDGirl]

Lisa,

If the decaf coffee was instant coffee, it could be because it is instant and not because it is coffee.

I was reading last night in a gluten-free book that instant coffee has gluten.

If that book is right...

[gf-soph]

The fact that you reacted to oats doesn't rule out celiac or gluten intolerance. The protein in oats is similar to gluten, so some celiacs can eat oats, and some can't. It may be that you react to gluten and to oats. It may also be that the food you ate at your friend's place was contaminated with gluten.

I find that decaf coffee is fine for me if my system is settled. If I am unwell because of another reason it doesn't always sit well. It may be that the very small amount of caffiene is enough to irritate your system if something else is happening. You could cut it out againa and try reintroducing it when your system is settled down.

Re the apples, have you heard of fructose malabsorption? They are a problem food for me too, I had to give them up long ago. I found that I could eat them if I stewed the apples with some sugar and cinnamon, which helps equal out the fructose balance.

[Lizking531]

Sorry, not to hi-jack, but this sounds somewhat familiar to me. One thing I have been wondering

Can you be sensitive to oats, but not gluten?

I can't really see why it wouldn't be possible, but I haven't ran across any mention of just being intolerant of oats before.

Hell, I dunno - I feel like I'm chasing my own tail half the time trying to figure out what's up

[vegan lisa]

Thank you for your reassuring replies. My stomach pain is less today, though I am having dizzy spells and the feeling like my face, chest, and foot are asleep. It comes and goes, and is disconcerting, but not severe. I will stick with the diet until I feel better again, and then will be more scientific about reintroducing foods.

I was wondering if maybe I should get a food allergy (IgE) test done, either the blood test or a skin prick test. It is certainly possible to have a food allergy to oats, but not wheat or gluten.

I have just never thought that coffee was a likely allergen, nor that stomach pain was a common symptom. I still might try the food allergy testing route, though, just to see what turns up. The fructose malabsorbtion is another rock I think I should look under. Is that usually diagnosed with an elimination diet?

Thanks for your great support and ideas,

Lisa

[cassP]

coffee totally irritates my intestines and i still drink it. I guess that's called addiction. If i have too much coffee or tea- i'll get explosive something if u know what i mean. I believe the tannins and acids are irritating to some people. Decaf still irritates my system but not as much as regular.

[mushroom]

I should add that I gave up caffeine years ago, but I have absolutely no problems with decaf coffee