trents

Ariadne100,

I think we can all relate to the skepticism you describe from people, even in the medical community. I look at it as belonging to the vanguard of medical discovery. I imagine disease researchers got the same treatment in the 1800's when they were telling doctors that infections were being caused by organisms too small to be seen with the naked eye. And it doesn't help those of us who truly do have issues with gluten consumption that there is a faddish element to it in the general population. 

Just a reminder that though there have been laws passed to improve food labeling for the benefit of those who need to avoid certain food elements, the commercial food industry can and does change the formulation of their products without notice. We get used to buying certain things because we checked them at some point in time and they contained no gluten. Beware! There is no guarantee it will stay that way forever. As an example, my wife and I used to buy rotisserie chicken from a national grocery chain which initially did not contain gluten when we checked the ingredient label. After two or three years we checked it again and found it now contained wheat. Don't take anything for granted.

To what CL said I would also add those who do have celiac disease or gluten intolerance/sensitivity will experience improvement when eliminating gluten. That would make endoscopes and lab work unnecessary except to the extent of providing peace of mind and perhaps reinforcing the need to eat gluten free. The crux of the matter, whatever your test results turn out to be or even if you don't get tested, is whether or not eating gluten-free works to relieve your symptoms. 

If you do decide to do the gluten challenge to get tested, I would work gluten into your diet very gradually. If you have been gluten-free for a long time and suddenly throw a heavy dose of gluten in your gut, it may not like it at all, even if you are a celiac. That's true of anything new we introduce into our diets. 

Ariandne100,

Sounds like you have done a good assessment here of things that likely will cause you issues. I find that over time I have developed various kinds of reactions to things that never used to bother me. Some of may be related to plain old age-related changes. Our immune system becomes more dysfunctional as we age even in the absence of celiac disease and our digestive system becomes less efficient and more sensitive.

Ariadne,

You say you always are careful to read food labels so we assume you are avoiding gluten. But GFinDC makes a good point about about the vegetarian diet and the challenge it presents in regard to B12 deficiency. Even though you do eat fish and may be getting some B12 in the fish you consume, it may be much less than your body actually needs. There are essentially no known plant sources of B12. The only one I know of is some kind of fermented bean curd that is found in some Asian cultures. Do you also eat eggs and dairy? Do you take a strong B12 supplement?

Having said all that, could you have developed some migraine triggers that were not originally present? As one who suffers from migraines myself, I realize those can be difficult to pin down. There are many things that can trigger migraines. Everything from what we eat/drink, to stress, to disrupted sleep habits, etc., etc., etc. And the hard thing is there are often thresholds. By that I mean we can consume a certain amount of something and get no migraines but if we consume more of it then we get them. So that makes it difficult to pin down. Have their been any changes in your diet or lifestyle lately?

I have cluster migraines and every year about this time of year (late winter/early spring) I start getting them. I'm not sure what's going on there. Is it changing daylight/darkness patterns? Pollen? I sympathize with you. My only relief at these times comes from the medication sumatriptan.

Did you check the ingredients for the Heinz tomato soup? Many or most canned soups use wheat starch as a thickener. 

It is also true that those with one autoimmune disease often develop others.

Have you suggested this to your primary care doc? I find that if I link some some evidence from the web I sometimes get listened to by physicians. There is much more awareness in general concerning celiac disease within the medical community than there was 15-20 years ago but there is still a lot of ignorance as well. Many of the symptoms you list are not uncommonly associated with Celiac disease.

You do not specifically say you have been diagnosed with celiac disease. Have you?

Very interesting and seems to be another piece of the puzzle. However, it doesn't answer the question of why this only happens with certain genotypes. Presumably, those without the Celiac genes would be exposed to the same bacteria but their immune systems would still be able to differentiate between the bacteria and the grain when encountering the same gluten protein fragment. However, it may answer the question of what triggers the expression of the disease and turns it from the latent form to the active form.

No insurance. That makes it tough to get specialty care.

I guess the only thing I would suggest is keeping a food diary to see if there is an association between things in your diet and these bouts of bowel dysfunction you describe.

Hi Fredo,

It's very common for Celiacs to have other GI problems not related to gluten consumption such as colitis or IBS. In addition, Celiacs often develop other food intolerances such as for dairy or soy. However, the symptoms you describe in the second paragraph of your post suggest to me something something systemic and/or autoimmune related.

Does your insurance allow you to directly make appointments with specialists? If so, I would be looking at hooking up with a gastro enterologist or a rheumatologist (doc for auto immune diseases) or would press your primary care doc to make such appointments.

Do you have celiac disease? Has this been confirmed by endoscopy/biopsy? You do not actually say you have celiac disease, only that you are trying to eat gluten free.

It takes about two hours for food to leave the stomach and go into the small bowel. Speaking for myself, it is at that point when, if I have eaten gluten or any of the several other foods that give me problems, that I begin to experience nausea. I would think texture issues would have a more immediate effect. Does your daughter have problems swallowing pills? I guess where I'm headed with this is I wonder if she needs some kind of esophageal dilation procedure.

Look for ingredients common to all the baked goods that are causing problems. Could this be a texture issue? How long does it take after consumption for the emesis to start?

And I always caution people in the gluten intolerant/celiac community not to assume that medical issues are necessarily related to problems with gluten. If you don't find answers where you start to look, look elsewhere. Something like you describe could have another medical basis and if it isn't resolved soon I would encourage you to get some GI testing done for your daughter.

On 11/26/2019 at 4:35 PM, GFinDC said:

You can also try putting all gluten-free foods on the top shelf of the refrig.  Or get a separate dorm size refrig for your gluten-free items.

The problem with this is it requires the cooperation of everyone in the house and total consistency or it becomes unreliable and risky. 

Thanks, Posterboy for all your diligent research on behalf of our online community.

5 hours ago, RCFR said:

This is all so helpful! AND... *slaps forehead* I just realized that on Saturday I ate breakfast out and stupidly had sausage and didn't know to ask if the eggs had anything in them. This would explain the timing of feeling better at first, then worse starting on Saturday.

I can't believe how stubborn I am sometimes, completely believing that I was doing a perfect job! Yikes! 

SO much good information from everyone -- regardless of whether it was the sausage (likely) -- I am better understanding the way celiac works, the autoimmune aspect in terms of how the effects of gluten hang on past the initial reaction... and also good food for thought about B12 especially since that's been tested as low in the past. SO helpful!!!

It's more involved than just asking about ingredients "purposely" put into foods when you eat out. That doesn't rule out incidental cross contamination. For instance, if eggs are scrambled on the same griddle as French toast is cooked on or French fries being cooked in the same vat that breaded fish patties are. It can only take a trace of gluten to trigger a reaction. Some meds use wheat flour as filler. "Malt flavoring" is often put in boxed cereal, etc. Like Cycling Lady said, it really takes a while to get educated about the places gluten can show up in food, including fancy ingredient terminology that obscures the presence of wheat.

You also need to evaluate the risk posed by foods that would seem to have nothing to do with wheat but are "processed on equipment that also processes wheat" like major brand name oatmeal, for instance and most canned nuts as well as a lot of candy products. If you really take this seriously, after a year or so you get to the point where you almost have a six sense about what might contain wheat. 

And after you have really been gluten free for a significant period of time when you do get "glutened" you may find you get violently ill as all tolerance for it is now gone from your system. When that happens, you become very determined to avoid it in the future.

Fatigue is a common experience with celiac disease. There are more factors involved than what standard blood work can detect.

Sounds like you are not yet making a serious effort to eat gluten free. That would seem to be the next step in determining if your issues are gluten related or due to something else. You won't know until you eliminate gluten from the equation. 

Good catch, PB and a nice, concise post. Thanks.

Please keep us posted if you find out more. This is very weird. The two onsets of rhabdo both followed resistance type exercises. Do you know if say, jogging or swimming would do the same?

I have not heard that there is any connection between the two.

Are you on a statin by any chance?

From your own admission, dry (toast and chips) and spicy foods seem to trigger this cough reaction and the "tickle" behind the sternum. I'm certainly no doctor but that suggests to me there is something being irritated when you eat these things. If that irritated area is on or near epiglottis (the flapper valve that closes off the windpipe when you swallow) then that could be causing the cough, mimicking what happens when food starts to, as we say, "go down the wrong way." If the epiglottis itself is swollen it may be reacting to the dry, spicy food or it may not be sealing well. Just brainstorming here.

The common denominator in all this seems to be eating. Does this happen every time you eat something or does it seem to be associated with certain foods or certain textures?

Since it has been 18 months since your last upper GI I would look into another one. You may have a wound of some kind that is being irritated when food is swallowed. Not sure how this might connect with the cough but anatomical structures close together in the body often share nerve branches. I've noticed this with bowel and bladder, for instance. When one needs emptying the other often feels full as well.

It won't hurt to take the PPI short term to see if GERD is actually a problem you have. How often do you have heartburn? Reflux doesn't just happen at night when you lay down, by the way. That is a misconception. An endoscopy would be in order to check for esophagial erosion and hiatal hermia. Particularly since the coughing happens in conjunction with eating.

Since this all started when you had a cold, another possibility might be a occult sinus infection producing post nasal drip.

May I ask, what is your age? 

I'm 68 and often I feel a little faint when standing up after doing a task requiring some exertion in the bent bent over position. I do not sense any syncopation or tachycardia at these times or any other. I just attribute it to postural LBP. I'm sure the pump and the entire vascular system are not what they used to be even though there are at this time no particular cardiac issues. So I am assuming that the exertion diverts more blood flow to the muscles and the brain gets less. 

Sounds like you have developed some borderline cardiac arrhythmia issues that are transient at this point and you know how to control them. You have also communicated with your physician what is going on so all that is good. If it becomes more frequent and/or you find you can't control it with the vagal maneuvers I would certainly see the doc again. 

I assume you are not connecting this with celiac disease or gluten exposure as you mention nothing about that except it occurred after eating toast. I assume that was gluten-free toast.

"You could try a low FODMAP diet for a few months to see of it helps.  You can also try the gluten-free diet to see of things improve.  Celiac disease testing isn't perfect and can miss some people.  You could have it but your body just may not test well.  Maybe in a few years your blood antibodies would show up better.  But who wants to wait a couple years to get started healing?  Not me."

This^

But I would start with one or the other and not both at the same time. If you do both at the same time and feel better you won't know which was the problem. Or, do both at the same time and then if you feel better, go off one of them at a time and see if the symptoms return. The FODMAP diet eliminates a lot of nutrition-packed foods so if you don't need to be eliminating those foods you wouldn't want to.