Eating Gluten Won't Cause A Reaction...

[ChrissyInNH]

I went to see a gastro today for the first time, hoping for some insight and possibly a diagnosis. According to him, ingesting gluten does not invoke a reaction (such as headache, diarrhea, stomach cramps, moodiness, etc.) in someone with celiac disease. He said the gluten is not the irritant that causes an immediate reaction (within an hour or a couple of days). He said that it is the damage to the intestine that causes the malabsorption and ingesting gluten won't cause a problem for weeks. He compared it to lactose intolerance and said that the lactose is just sitting there irritating and causing gas and bloating, but gluten does not affect us that way - apparently.

Uh, does this sound right to you guys? I'm new at this and from what you all have said, this couldn't be farther from the truth! Did I just waste another $20 co-pay? (not to mention driving an hour down and back to Boston, fighting ttraffic.)

I am really frustrated. I think I'm just going to keep myself and my son (age 2) on the gluten-free diet and forget about getting an official dx. I feel better than I have in years and my son is doing great! Maybe in 10 years or so the medical community will wake up and we can get a dx. I don't mean to doctor bash. I'm just feeling upset right now, so I hope you'll excuse me.

Christine

[plantime]

Sounds like he might be referring to the reason we are sick for two weeks after a gluten accident. Maybe he is considering the more immediate reaction to be anaphylactoid in nature. Either way, I am unable to breathe, have the urge to vomit, and get horrible stomach cramps within a hopur or two of eating it, and the misery lasts for more than a week. If you are doing so much better on a gluten-free diet, then go for it! Just remember that you will need something in writing in case you are hospitalized for any other reason. I ordered MedicAlert tags, since most emergency people will accept what they say without question in event of an emergency!

[YankeeDB]

Crissy (beautiful picture btw!), I think your instincts are right on and doctors sometimes make blanket statements that are wrong. Everyone is wrong sometimes! Trying the gluten-free diet may be your best bet; or, you could consult another gi doctor after inquiring to find one that seems more open/more knowledgable.

Good luck to you and your little one!

[tarnalberry]

I think an awful lot of celiacs would disagree with that doc. There are peer-reviewed published studies of the opiate effects of gluten that is not completely broken down in the intestines, as well as other effects.

The gluten ITSELF doesn't directly cause most of the symptoms - that's true. But that's because it's just the first thing on the list of reactions, and it's the immune system (which is reacting to the gluten) that causes the symptoms. But for all intents and purposes, there is no need to distinguish between the two, because if you don't eat the gluten, you don't cause your immune system to react to it.

[Guest jhmom]

Hi Christine , well I can tell you first hand when I accidently ingest gluten I know it sometimes within 30 minutes, a couple of hours or as long as 10 hours. My symptoms then are mainly double overing abdominal pain & diarrhea.

I think the idea of staying gluten-free is a good idea especially if you have seen an improvement. If you decide later to get a dx I would suggest Open Original Shared Link which is the stool panel test that I am sure you have read about here and the good thing about Enterolab is you do not have to be on gluten to receive accurate results. Another route would be to find a doc that knows something about Celiac.

Take care

[ChrissyInNH]

Thanks for your responses everyone. I really appreciate it! I'm wondering if my insurance might cover Enterolab tests. I actually have something in my insurance that covers "alternative care" such as massage, acupuncture, etc., so if my regular insurance won't cover it, the alternative care part might.

Thanks again!

Chris

[plantime]

The worst your insurance company can do is refuse to cover it, so I would ask. You might need a request for the test from your doctor. Enterolab says they will send a receipt that can be submitted to insurance.

[wildones]

Just remember that you will need something in writing in case you are hospitalized for any other reason. I ordered MedicAlert tags, since most emergency people will accept what they say without question in event of an emergency!

Why do you think you would need anything in writing if hospitalized ? My son has been in the ER several times, but not hospitalized again since his diagnosis. He has had 30 surgeries/proceedures and many hospital admissions in his 7-1/2 yrs. We have never had to have anything 'in writing' before. I agree that it is a good idea if unconscious to have a medic alert bracelet, in order to avoid treatments that would be harmful/get necessary meds and/or treatments for certain conditions. I can't think of many or any situations that would be necesary in celiac disease, because you would need to be conscious in order to eat, and you wouldn't need to 'prove it in writing' to get ok foods right ?

Some meds that contain gluten could be harmful maybe, but again unless you are unconscious, you would not be forced to take any gluten containing meds, just because you don't have any 'proof' in writing with you right ?

[plantime]

I am thinking of the possibility of a car accident, leaving no one conscious that can tell the doctors NO GLUTEN. If I don't make sure that everyone around me knows, then the results could be devastating (to my body, at least). I want it written in my charts, and on tags, so anyone can see in case I am not able to tell them. Too many medications contain gluten, including the "food packets" that were given to my mom in the ICU. Too many things happen to not be prepared.