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Not Celiac - So How Do I Know If I'm Still Gluten Sensitive?

AMaine

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GFinDC Veteran
GFinDC
Posted

I think the goop they give you to drink before a colonoscopy is called Movi-prep or some such. Basically cleans your insides out clean as a whistle. Thee are threads on here where people talk their experiences with the prep and such. Don't plan to go anywhere the day before the test but the bathroom.

I used to have green stool which later became black stool. They say the black indicates bleeding, usually not in the colon though, but higher up. Red blood is supposed to come from the colon. I think the idea on that is if the blood come from higher up it gets digested or broken down so it isn't red any more. I think that is kind of a general thing though, not true in every case.

All that just to say that it is possible to have bleeding and not have Chrohn's. Because I don't have Chrohn's.

Also, you should not expect all your symptoms to clear up in a month. Some people have symptoms continue for years. Not saying at all you shouldn't be checked here, just that still having symptoms doesn't mean their is a more serious problem. If you read my signature or others you can see lists of some other foods that can be problems. Also, eating a whole foods diet is going to get you better faster than eating a lot of gluten-free processed foods. A simple diet works well for us.

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AMaine Newbie
AMaine
Posted
  • Author

Hahaha I actually have to play piano (and sing) for my church the morning before. I figure I'll start the delicious meds immediately after. My directions sheet says to start at 10 but I'm hoping starting at 12 won't make too much difference - I can't get a replacement and I don't fancy running for the bathroom in the middle of the service. I'm not scheduled until noon the next day so I think that should give me plenty of time.

I really doubt I have Crohn's - my best friend from college has it, so I am VERY familiar with the symptoms of the disease and I have nothing like what she went through.

I think I've gotten it through my head that my symptoms may not all clear up in the first month - but I still hate being even a tiny bit uncertain. I honestly think that if I'm not 100% convinced in the next month or so, I will just go ahead and eat some gluten and see what happens. If what I think will happen happens... then I'll know. This will make me feel better.

Jessica N. Rookie
Jessica N.
Posted

Hahaha I actually have to play piano (and sing) for my church the morning before. I figure I'll start the delicious meds immediately after. My directions sheet says to start at 10 but I'm hoping starting at 12 won't make too much difference - I can't get a replacement and I don't fancy running for the bathroom in the middle of the service. I'm not scheduled until noon the next day so I think that should give me plenty of time.

I really doubt I have Crohn's - my best friend from college has it, so I am VERY familiar with the symptoms of the disease and I have nothing like what she went through.

I think I've gotten it through my head that my symptoms may not all clear up in the first month - but I still hate being even a tiny bit uncertain. I honestly think that if I'm not 100% convinced in the next month or so, I will just go ahead and eat some gluten and see what happens. If what I think will happen happens... then I'll know. This will make me feel better.

I can relate to a lot of what you are going through. I am on week 4 of gluten free (week 2 was BAD, I ate lots of processed gluten-free foods and I'm not use to processed so my stomach and intestines were waaayyyy off track). I THINK I am feeling better, bloating is no longer my biggest complaint as it was in the past, but I still get bloated. I feel so discouraged bc like you I want to know if this is it. How long will I have to eat this way to be sure if I am having issues with gluten? It seems so frustrating! I thought I was having issues with dairy the past 3 weeks, but this week I haven't noticed any relation...I feel like I am all over the place. I have C and don't usually get a relieved feeling after BMs, so my doctor wants a colonscopy and also prescribed me an anti-spasmodic to help relax me so I can have more frequent BMs. He said the non-relived feeling could be IBS, can you have IBS and celiac or gluten issues?

AMaine Newbie
AMaine
Posted
  • Author

The colonoscopy was AWFUL. The prep, which everyone told me was the worst part, was only mildly irritating. The worst part was the IV. It turns out that colonoscopy prep (which leaves you dehydrated) + Raynaud's disease (which makes your blood vessels contract) is a seriously bad combination. About 5 or 6 different people tried to give me an IV, for a grand total of TWELVE jabs. I am bruised from the elbows down - and I'm a choir teacher so I have to play piano. I am sore and miserable. Fortunately they finally got it, or I was about to have an unsedated colonoscopy. I know people have done it but I did NOT want to.

If I don't actually learn something from this, I am going to be seriously annoyed.

AMaine Newbie
AMaine
Posted
  • Author

So the colonoscopy results showed nothing, and I still don't feel right, so I give up. I just ate a full meal of gluten and I'm not feeling any different yet. How soon until I should notice something if I am going to have effects at all?

Katrala Contributor
Katrala
Posted

Anyone who has been off gluten for awhile may have a reaction when they reintroduce it (this goes for many different foods as well.)

Some people have immediate reactions. Some are more of a built-up reaction. It's really hard to say when / how you will react (if you do react at all.)

Is your doctor going to keep looking for causes?

Could there be any other type of food intolerance going on that you're suspicious of?

AMaine Newbie
AMaine
Posted
  • Author

My doctor has now ruled out pretty much everything else - the GI specialist has decreed it IBS. Which, I understand, doesn't mean that I don't have a problem with gluten. I was actually told that I had IBS a few years ago (after an insufficient celiac test and not being informed that not having celiac isn't assurance that you can eat gluten comfortably). In the past 2 years I have therefore tried cutting out pretty much everything BUT gluten to no avail. The only thing that I discovered that really bothered me was sugar alcohols, especially sorbitol.

So, I ate some bread (and a cookie) last night and had no immediate reaction. I actually feel pretty fine today too, but I did have a minor migraine this morning for the first time in weeks (lack of migraines has been one indication that has made me feel like the gluten free diet could be working) and while I haven't had major stomach problems, I've been feeling generally like I have mild menstrual cramps. Except, of course, I don't.

So I've decided to stay mostly gluten free, but to stress about it less. I don't mind doing it at home at ALL - the only thing has been ordering when we eat out (which my husband and I like to do a lot) and not being sure if something might have a slight gluten ingredient in it. So with such a mild result, and knowing that i don't have celiac or some other situation that would make eating small amounts of gluten hazardous to my overall health... when we go out, I'll order the most gluten-free item on the menu and not stress if there's something a LITTLE in it. This plan makes me feel MUCH better. I can live with this, even without the 100% certainty that I have a gluten intolerance (still wish I could have that certainty).

I'm also very pleased with myself for having found a bread pan that is long and narrow to hopefully create the perfect sandwich size bread. Feeling a lot calmer and less frustrated!

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kendon0015 Rookie
kendon0015
Posted

I just posted on another thread....PLEASE be sure to have a stool test. I am now being treated for C Diff, a nasty bacterial infection in the intestines. I was on Cipro for three UTI's in a row, and it caused this bacterial overgrowth. Have you been on antibiotics in the last several months?

I'm not a doctor, but MY advise is to start on a good probiotic right away.

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    • RMJ
      The Struggle Has Overtaken Me

      By RMJ · Posted

      Ginger38, that sounds very difficult.  Each dietary restriction makes it harder to figure out what to eat. Before my celiac diagnosis I already watched out for my cholesterol level and migraine triggers, but those are much easier than diabetes restrictions. One “bad” meal isn’t that much of a problem for cholesterol levels, and my migraines only happened if I consistently ate the triggers. After many years I’ve figured out how to bake gluten free but I think many recipes have more starch which wouldn’t work for diabetes. If you go with the elephant eating analogy, I think the first portion to work on would be the diabetes, since the immediate consequences of not being careful (passing out from low blood sugar, or diabetic coma from high blood sugar) are so severe. The next portion would be celiac. The serious consequences aren’t as immediate, but if you have celiac disease, I think of eating gluten like a booster shot - revving up the immune system, but to attack yourself leading to long term damage. It sounds like you are experiencing this damage now. I did a google search on “gluten free food for diabetics” and a number of sites with advice came up.  If your insurance will cover it and you can find one, a registered dietician who knows about both diabetes and celiac disease might help you figure out what to eat safely. Hopefully my post will both scare and encourage you, as requested, with a big dose of compassion because this sounds very difficult and you are clearly suffering.
    • Aretaeus Cappadocia
      The Struggle Has Overtaken Me

      By Aretaeus Cappadocia · Posted

      Reading the original post on this thread made me think of "How To Eat An Elephant". The key point is that a whole, big problem can seem insurmountable but if you break it into bite-sized pieces it is much easier to accomplish. Here is the google description. It's not bad: If you're facing a daunting goal, you can use these steps to "eat your elephant": Identify the Elephant: Clearly define the large project or goal that feels overwhelming. Break it Down: Divide the major task into smaller "bite-sized" pieces. If a piece still feels too big, break it down further. Prioritize: Decide which "bite" to take first based on necessity or impact. Focus on the Now: Instead of worrying about the whole animal, focus only on the single step you are taking right now. Maintain Consistency: Progress comes from taking the "next right step" every day until the task is complete. Celebrate Small Wins If I understood Ginger38's post correctly, you are facing the prospect of a gluten challenge, but you are already eating gluten on an intermittent basis. It also sounds like many of the symptoms you attribute to gluten consumption are in full expression. Step back and take a deep breath. Get a notebook and start a gluten-related diary. Don't try to make it perfect; just record what you can about food intake and what you experience as you go along. Talk to your Dr's office (nurse, Dr, whomever) about the challenge. The most rigorous challenge is for someone who has already gone truly gluten free but now needs a clear diagnosis. Someone who is already eating gluten should not need as much "challenge". Even at that, google describes an example challenge as 1-2 slice of bread or 1/2 cup of pasta a day. If that describes your existing diet you are already there. For the moment, try to focus on getting past the challenge and test. Once you have the results, start planning accordingly.
    • Aretaeus Cappadocia
      Gluten challenge - Need some guidance

      By Aretaeus Cappadocia · Posted

      I don't know the answer to your question any better than a google search, but I am sure someone else will step up and answer. I am popping up to recommend that you keep a careful diary (in case you weren't already). Try to catalog what you are eating and experiencing. Bring a copy to your next visit (and if you have access to the Dr, also send a copy a couple days in advance). Don't assume that they will read it. They might, but they also might be under tremendous time pressure and not get to it. Two other suggestions: if your healthcare provider has a web portal, sign on and search for "gluten challenge". They may have a standard page and Dr assumed you would find it on your own. If that doesn't work, call the Dr's office and ask the office for their official advice. You probably wouldn't need to speak to the Dr directly. There should be some nurse or staff member who could answer that
    • Xravith
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      By Xravith · Posted

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    • cristiana
      Low iron/high normal haemoglobin

      By cristiana · Posted

      V. interesting. It might well explain the tiredness, and the increased headaches, then.   I'm trying to get my TTG numbers down a bit by avoiding eating out.  Hopefully then if I've healed more I guess I will be able to absorb more iron.  Will find out at the next blood test in the autumn. Thanks so much for your help.  
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