Opinions Please...gluten Challenge?

[lizk]

Hello, I'm new here but have found so much helpful information already. I'll try to keep my story short. Last fall I started having gastro symptoms - bloating, diarrhea/loose stools, stomach cramps. During that time I also had frequent and sometimes severe headaches and also fatigue. Based on the limited amount I knew about gluten, I decided to try eliminating it from my diet to see if it made a difference. I noticed almost complete relief of bloating and stomach cramps, still had occasional D/loose stools. I was gluten-free for about a month, then tried a couple of days where I ate gluten. No notable stomach issues, but I got a severe headache, felt totally wiped out, and oddly, got a cold sore. I do get cold sores, but sometimes only one every couple of years. I had not had one in 3 years and then had 3 within 3 months. Not sure if it is connected. Anyway, based on that limited reaction, I decided to go to my general doctor who did a Celiac panel which came out negative. I decided to continue gluten free on my own because it seemed to be making me feel better. All of the symptoms I had went away but I still had loose stools every morning - not D, but just "loose" and did not seem normal (sometimes undigested food in them) - sorry I know it is TMI. However, I had no stomach cramps or bloating. Otherwise felt fine, even no headaches.

After much reading on here and talking to a friend who is Celiac, I decided to also eliminate dairy, but in the meantime because of what I think are abnormal stools, I decided to ask for a referral to a GI. After a few weeks without dairy, stools are beginning to seem "normal" but not consistently. I have the GI appointment in a month and here is where I would love some opinions...should I start eating gluten until the appointment?? I have read a lot here about the limitations in testing (and suspect that it could have affected my first Celiac panel results - that doc assured me that being on a gluten-free diet would not matter). I know tests can be unreliable in general and even more so if not eating gluten. Given that my symptoms are much better, I honestly am questioning why I am even going to this appointment. I guess it is because something just still doesn't seem normal although the major symptoms have disappeared. Also I'm not sure it is gluten, so I need to be sure there is nothing else going on. I am just afraid that I will have almost no symptoms to describe to the GI and they won't have anything to go on.

I have also been keeping a food diary for the past 6 weeks or so and noting any symptoms there. Oh, and also I have little itchy bumps that I suspect could be DH but I just don't know. I have been getting them even since going gluten-free, not severe, and I'm aware of the iodine connection but they are not severe enough for me to tell if it really is DH or not.

Thank you for reading and I appreciate any opinions you have.

Liz

[beachbirdie]

After much reading on here and talking to a friend who is Celiac, I decided to also eliminate dairy, but in the meantime because of what I think are abnormal stools, I decided to ask for a referral to a GI. After a few weeks without dairy, stools are beginning to seem "normal" but not consistently. I have the GI appointment in a month and here is where I would love some opinions...should I start eating gluten until the appointment?? I have read a lot here about the limitations in testing (and suspect that it could have affected my first Celiac panel results - that doc assured me that being on a gluten-free diet would not matter).

I have also been keeping a food diary for the past 6 weeks or so and noting any symptoms there. Oh, and also I have little itchy bumps that I suspect could be DH but I just don't know. I have been getting them even since going gluten-free, not severe, and I'm aware of the iodine connection but they are not severe enough for me to tell if it really is DH or not.

Thank you for reading and I appreciate any opinions you have.

Liz

Hi Liz, welcome to the forum.

The doc who said being gluten free didn't matter was wrong. You need to be eating gluten (at least the equivalent of 3-4 slices of bread) for several months before you test for antibodies if you expect a reliable result.

As for the rash, it might be DH, it might be something else. You would need to ask for a biopsy of the skin NEXT TO fresh lesions in order to determine DH. Some also do a trial of the drug Dapsone. If the rash retreats, it was DH.

Good luck to you.

[mushroom]

Here is another perspective. I am not telling you whether or not to be tested, but just a point of view, mind. I agree with beachbirdie that your previous test results were invalid because you had not been eating gluten. Similarly, I do not think that one month's worth of gluten-eating would be sufficient.

So let's look at your gluten free-ness. You have noted significant improvement in symptoms. Further improvement after taking dairy out of your diet. However, you still have loose stools and sometimes undigested food and it has been six months since you went gluten free. This is not at all unusual. Gluten affects the production of enzymes in the pancreas (decreases the number of enzymes) and enzymes are needed to digest foods. A good percentage of us take digestive enzymes to supplement what our body makes, especially in the early healing phase (which you are still in). Also, the enzyme to digest the lactose in milk is made in the villi which are damaged by gluten in the small intestine, so you have to wait for that to heal before you can naturally digest lactose. Many of us also take a high quality probiotic to promote good flora in the gut and aid digestion and healing.

Let's suppose the itchy bumps are dermatitis herpetiformis. It takes a long time for the antibodies in the skin to disappear and new outbreaks can occur for a year or two after quitting gluten, especially if your DH is iodine sensitive.

So it is too soon to say whether removal of gluten is going to solve your problems, and you would need to eat more gluten to get a valid test - two to three months. I would suggest maybe at this point you give it another six months with some appropriate supplements and then re-evaluate. The gluten challenge is going to be equally painful whether you do it now or do it in six months, and you might not have to do it at all if you wait. On other other hand, if your symptoms persist, it may well not be gluten and you may need further testing. But at least you will have given yourself time to heal and will have more information.

[lizk]

Beachbirdie and Mushroom - thank you both for your replies! It is so helpful to have someone to bounce thoughts off of when you really have no idea what to do. I have tried to read as much as I can on here but it can feel overwhelming so I decided just to post my specific question/thoughts and see what replies I would get. It is very helpful to hear that just one month on gluten would probably not be enough - I was thinking I would feel sort of silly going to the GI and not having any current symptoms, but now I think it is fine if I just say, hey I was having these symptoms, I went off gluten and dairy, here is my food log (I have noted anytime I get the itchy bumps or basically anything, all bowel stuff, etc.), and here is what is going on now. Then at least I have established a contact with the GI and she will have a history of my symptoms and she can decide if she wants to test with a gluten challenge (and I am aware of what is a realistic timeframe now) or whatever. At least I will have someone to go to if I start having symptoms again.

Thank you, thank you, this really is a great place because even when family is supportive it is just really difficult to explain sometimes what I am thinking about and also difficult to explain how I ALWAYS seem to be thinking about what I am eating and aware of every tiny thing going on whether it is a slight headache, joint pain, etc.

Thanks also for the explanations about healing time and the supplements, I will definitely look into some digestive enzymes. I didn't mention it but I have been taking Culturelle (thanks to seeing it mentioned on here) for about the past month and whether it is that or eliminating dairy, something is helping I think that is a probiotic though so I will also look into digestive enzymes.

Thank you!

[basilicious]

Hi Liz, I would add that too little stomach acid can contribute to having undigested food in stools. Now, certainly if you have a gluten issue then it's clear that it's throwing off your digestive enzymes and process - but just be aware that that could be a separate but related issue. In fact, a lot of people are diagnosed with too much acid when in fact they have too little, since the symptoms can be the same.

Depending on your symptoms, as you try to promote healing, you may want to consider natural ways to boost stomach acid; some people swear by vinegar (not sure exactly how they do it, but they swallow some small amount of vinegar before eating I believe). Not sure if you drink alcohol, but a glass of wine with dinner also helps with that (but other alcohols are not shown to offer the same beneficial acidic effect.) Good luck!

[lizk]

Thank you basilicious! I have heard about some people taking apple cider vinegar as well but never quite knew what it was for. I'll look into it and give it a try - I'm up for anything especially if it is a natural way to help balance things out. In the meantime, I will happily have a glass of wine with dinner!

I am really limiting processed foods too which I hope will help but it is difficult. I sometimes have a slice of Udi's toast with an egg and will eat a few Tostitos chips with salsa or fresh guacamole. A square of DF chocolate when I want a treat

Mostly I eat whole foods though and am trying to keep the processed stuff to a minimum. The more I do the more I think it points to gluten, simply because I have not had any of the major symptoms since going gluten-free. The only two times I have been sick since going gluten-free are coincidentally once when I ate out at a restaurant and once at a food bar (stupid, I know - it was early on and I thought it would be ok to eat something that was gluten-free). The restaurant was very accomodating but I was sick immediately after leaving with stomach cramps and D, so even though what they brought me was gluten-free there must have been something CC'd. Everything I ate there I have eaten at home with no problems (smoked salmon, eggs, greens) so I don't think it was a reaction to anything else there. Their specialty was eggs benedict (obviously I didn't have the English muffin) so I assume there were lots of crumbs around the kitchen!

[tom]

...

You need to be eating gluten (at least the equivalent of 3-4 slices of bread) for several months before you test for antibodies if you expect a reliable result.

...

I think we all wish the duration & quantity for this was more consistently defined. Understandable though, from the viewpoint of how hard it'd be to get test subjects for a definitively harmful few months.

I had an appt a few yrs ago w/ the head of the GI dept at Stanford & he said a half slice of bread/day for a month. I'm sure I've seen others quoting their Dr that 2 wks was enough.

I don't think anybody really knows.

I also always found it puzzling that conventional wisdom is to eat gluten up til the day of tests/biopsy, yet when someone says they're 100% gluten-free for a week w/out feeling better it "takes time to heal". (I do realize that lab results & 'how we're feeling' isn't quite apples-to-apples but imho there's enough crossover to border on paradoxical)

Anyway, back on topic, w/out a very compelling reason for an official dx, I'd have a tough time making myself sick if I'm already certain I'm gluten-free for life afterwards regardless of results.

Good luck whichever way you go.

[lizk]

Anyway, back on topic, w/out a very compelling reason for an official dx, I'd have a tough time making myself sick if I'm already certain I'm gluten-free for life afterwards regardless of results.

Good luck whichever way you go.

Thanks for your reply! That is a great point...I don't have any reason for an official dx and I am quite sure no matter what happens I will remain gluten-free simply because I know it makes me feel better.

[cavernio]

I also always found it puzzling that conventional wisdom is to eat gluten up til the day of tests/biopsy, yet when someone says they're 100% gluten-free for a week w/out feeling better it "takes time to heal". (I do realize that lab results & 'how we're feeling' isn't quite apples-to-apples but imho there's enough crossover to border on paradoxical)

This thought has occurred to me too, however, mainly in the hopes that I won't have to start eating gluten again!

My bloodwork showed up positive for celiac in early Jan. As soon as it was found, I was told to go completely gluten free.

However, due to the horrible lack of doctors where I live, I'm still waiting for an appointment (which itself may be months after them calling) with a GI specialist. I haven't been told that I'll have to start eating gluten again though, but I haven't spoken to the specialist yet either.

I did speak to my doctor friend whose subspecialty involved internal medecine, and she didn't say anything about having to eat gluten again.

The way I understand it, (and I may be wrong), is that the antibodies need to not only build up in order to be noticed in the bloodwork, but they also have to get into your bloodstream from your mucuous membranes (like your intestines) where they usually stay. Some other types of anitbodies will just go away in a couple days, so perhaps the antigluten ones are quick to get made and then quickly go away, but they will only enter the bloodstream once the intestinal wall gets damaged, or perhaps only when they build of to very high levels in the intestines first.

I have tried to look this up on the internet but haven't found anything definitive as to how long elevated antigluten antibodies last; found lots about other types of antibodies though, and their elevation ranges from, as I said, a couple days to months/never really going away. Like someone else said, I'm not sure the medical community really knows how long they'll stay elevated. It may also be hard to discern because gluten itself seems like it can stay for awhile in your intestines, and this itself may vary from person to person depending on what else you eat, how often you poo, etc.

But for a biopsy, they're not measuring antibodies but the level of physical damage to your intestines (I think). I think the long healing process is because it takes a long time for the actual tissue to repair itself. If this is the case, then you, and me, should still show intestinal damage after a couple months of being gluten-free.

I'm actually not even sure if I'm going to get a biopsy or just a scope to make sure there's nothing else wrong in there; I had, and still do get sometimes, pain only in my left abdomen, often in the same small area, that feels nothing like diarrhea or constipation.

If I were you I would definitely do the biopsy still, just in case there's something else wrong as well. Even if it comes back totally negative, then you can stil pursue your gluten-free diet in peace; nothing lost, you know you feel better on it. But if it comes back you have a tapeworm or something as well (I dunno, just a random thing), you'll be happy you had it!

[beachbirdie]

The way I understand it, (and I may be wrong), is that the antibodies need to not only build up in order to be noticed in the bloodwork, but they also have to get into your bloodstream from your mucuous membranes (like your intestines) where they usually stay. Some other types of anitbodies will just go away in a couple days, so perhaps the antigluten ones are quick to get made and then quickly go away, but they will only enter the bloodstream once the intestinal wall gets damaged, or perhaps only when they build of to very high levels in the intestines first.

I have tried to look this up on the internet but haven't found anything definitive as to how long elevated antigluten antibodies last; found lots about other types of antibodies though, and their elevation ranges from, as I said, a couple days to months/never really going away. Like someone else said, I'm not sure the medical community really knows how long they'll stay elevated. It may also be hard to discern because gluten itself seems like it can stay for awhile in your intestines, and this itself may vary from person to person depending on what else you eat, how often you poo, etc.

That's interesting thinking. I've been wondering along those same lines, but wasn't quite sure how to verbalize it. I wonder if this is possibly related to the different genetic types. I have read descriptions of how the villi in different genetic types "grab" and present gluten differently (and have different ways of "deamidating"), which fits with your idea. Also, it looks like different people may have different dose tolerances...makes me wonder if it simply takes more gluten exposure to trigger celiac in the lower risk genetic types and less gluten for the higher risk types. I haven't read enough to get my thoughts thoroughly in order, but it's fascinating nonetheless!