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Gluten Challenge: Tips?!

healinginprogress

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healinginprogress Enthusiast
healinginprogress
Posted

So...8 months later and I'm FINALLY getting the colonoscopy and gastroscopy I need before I can get surgery. I've still been quite ill, despite going gluten-free, so there is some concern that more is going on, but it may just be the damage they are planning to repair. While they're messing around in there they want to do a biopsy do get the "DEFINITIVE DIAGNOSIS". So? Gluten Challenge! Well, after merely a day and a half, I understand why it's called a "Challenge"!!!

I'm wondering if anyone has tips for dealing with any of the symptoms? The nausea seems to be the worst for me so far (haven't got to the big "D" yet...), along with a migraine, fogginess, anxiety, and fatigue.

If anyone found great ways to cope with the challenge...please...SHARE!!! :)

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domesticactivist Collaborator
domesticactivist
Posted

I haven't done it, but I have a couple thoughts for you.

1. How long are they having you do the challenge before the biopsy? A few days is not enough for an accurate result.

2. Please record all your symptoms and what you ate in detail. That way if you can't stick with the challenge at least you'll have something to show your doctor.

Good luck!

ravenwoodglass Mentor
ravenwoodglass
Posted

Keep a record of symptoms as the other poster stated. In addition if things get bad call the doctor's office and ask to speak with either the doctor or a nurse. They may need to call you back but most will. Then give them all the gory details if you are being woken up at night by the pain and D make sure they know that. Some doctors will advise you to stop the challenge if symptoms are severe.

Googles Community Regular
Googles
Posted

When I get glutened I get nausea for multiple days afterwards (once for 3 months). My doctor prescribed an anti-nausea med to help me be able to eat, as without it I couldn't keep food down. It helped a lot. You might want to look into that for the nausea. I was going to say make sure it is gluten free, but if you are on a challenge, that might not matter.

Monklady123 Collaborator
Monklady123
Posted

So...8 months later and I'm FINALLY getting the colonoscopy and gastroscopy I need before I can get surgery. I've still been quite ill, despite going gluten-free, so there is some concern that more is going on, but it may just be the damage they are planning to repair. While they're messing around in there they want to do a biopsy do get the "DEFINITIVE DIAGNOSIS". So? Gluten Challenge! Well, after merely a day and a half, I understand why it's called a "Challenge"!!!

I'm wondering if anyone has tips for dealing with any of the symptoms? The nausea seems to be the worst for me so far (haven't got to the big "D" yet...), along with a migraine, fogginess, anxiety, and fatigue.

If anyone found great ways to cope with the challenge...please...SHARE!!! :)

I have no suggestions, but I'm wondering why anyone feels they need a "definitive diagnosis"? seriously... if you feel good when you're off gluten and terrible when you're on it...well then why does it matter to you if you have a diagnosis? I'm using "you" in the general sense, not specifically to the OP. I don't understand why anyone would put themselves through this "challenge".

Googles Community Regular
Googles
Posted

I have no suggestions, but I'm wondering why anyone feels they need a "definitive diagnosis"? seriously... if you feel good when you're off gluten and terrible when you're on it...well then why does it matter to you if you have a diagnosis? I'm using "you" in the general sense, not specifically to the OP. I don't understand why anyone would put themselves through this "challenge".

I don't know if this is why the OP is doing it, but, sometimes people need it for accommodations, like for school or work. Without an official diagnosis from a doctor they don't have to provide those. Also sometimes it is easier for people to stick to the diet when they have an official diagnosis as it is so challenging. It is easier for some people than trying to wonder if it could be something else possibly. Also sometimes family is more accepting with an official diagnosis, and don't question that it is "in the person's head".

love2travel Mentor
love2travel
Posted

I have no suggestions, but I'm wondering why anyone feels they need a "definitive diagnosis"? seriously... if you feel good when you're off gluten and terrible when you're on it...well then why does it matter to you if you have a diagnosis? I'm using "you" in the general sense, not specifically to the OP. I don't understand why anyone would put themselves through this "challenge".

I put myself through the challenge because gluten did not make me sick at all. Nil. So, I truly did not believe I had celiac until the biopsies came back positive. So, I needed it to prove that I have the disease otherwise I likely would not have done anything about it. I frankly LOVED the challenge, getting to eat all the yummy gluten I wanted to for three whole months. I made a gigantic list of my favourites and crossed them off as I had them one last time. If I felt terrible on gluten it would likely be a very different story.

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healinginprogress Enthusiast
healinginprogress
Posted
  • Author

Thank you for the responses! Now, I am not a quitter, so I feel a little like I "wimped out", but the intensity of my migraine the 3rd morning definitely changed my mind about the "challenge". I will call the doctor on Monday and see what he says. He did, after all, give me the option. And if I was asymptomatic then I could see staying on the challenge for sure. But I puked so many times yesterday that my throat is sore and that's just not healthy. The pain and the fatigue are not worth it, either. After they do the colonoscopy/endoscopy they are scheduling me for surgery, so I'm going to need to be as healthy as possible going into that. I think this is all the proof I need that I am indeed Celiac!

Why did I want the definitive diagnosis? I'm the type of person who needs to KNOW things. I thrive on information, numbers, facts...not so much theories and probabilities. I like certainty. I know life isn't about certainty, it's just what makes me comfortable. I feel weird saying I have Celiac Disease when I don't have the data to back it up, aside from a very positive blood test and very telling symptoms. I just graduated from university, so I guess I'm used to having to prove things.

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      By Dr. Gunn · Posted

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      What Dr. Gunn states is essentially true. It is a rule out measure. But be aware that to possess either of the two primary genes that have been identified with celiac disease (or both) doesn't necessarily mean that you have or will develop celiac disease. Almost 40% of the general population carries one or both but only about 1% of the general population will develop active celiac disease. It remains latent until triggered by some stress event which may or may not occur. So, there is a genetic component to celiac disease but there is also an epigenetic component. 
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      Have you had celiac genetic risk testing? A celiac genetic test is accurate with or without gluten in your diet. If you don't carry the celiac risk genes you can effectively rule out celiac disease for life. 
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      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
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