What Next?

[mjhurd31]

This is my first post here. I'll give a rundown, I apologize if it gets lengthy.

This past July I returned from a trip to Greece, and ever since I have had symptoms which have very gradually gotten worse. Stomach bloating, diarrhea/loose stool, fatigue, shortness of breath, itchiness, and in the past month (which made me end up seeing a doctor) I even had some blood (bright red) in stool. These have been accompanied by depression, irritability, and memory loss/short attention span. Overall, I just plain felt "gross" down there.

I have been stool & blood tested for all the regulars involving IBS, travelers diarrhea, e coli, etc. and nothing showed up. I even did an HIV test, worrying it was something simple but my immune system was just too weak to handle it.

Then, I found this website and discovered celiac. I spoke with my sister, who is a PA, and found out she has an allergy to gluten. And also found out celiac may be triggered after a stressful event (in Greece my girlfriend of 4+ years and I broke up). I am starting to think this is what I might have.

This thought was heightened because I started gluten free and already felt a little better after 3 days. I then went off the diet for another 3 days and felt worse. Now I am back on and feel noticeably better, but still have symptoms such as loose stool and pain in my lower back. Stomach bloating has ebbed for the most part. The blood is no longer, and I cannot feel any pain in the "problem area" from that like I used to.

However, I just today received results of my blood test for celiac, and they were negative. I had already been back on the gluten free train for 2 days before I got this test. Would this affect results?

I guess at this point I just feel defeated. I don't know the next step to take, or how to proceed. I will not go back to that doctor (I called for 3 days before they got back to me), but I thought someone on this forum might be able to give some insight on if it sounds like celiac, what I should do next, should I try to cut anything else out of my diet, etc.?

ANY help would be greatly appreciated. I am losing my mind.

[rinne]

Hi.

Sorry to hear that you are feeling so badly.

I think you may find it difficult to get a diagnosis which doesn't mean you shouldn't try but the ususal celiac tests are not reliable. Hopefully someone will come along soon who can give you a better analysis of what tests are good. I think there is a genetic test which some have used.

With my illness and a sister and brother both diagnosed with celiac I opted out of the testing procedure after the blood test they came back negative. I had lost (melted away) forty pounds at that point and had always known bread was a problem for me.

In my opinion a good place to start would be with a gluten free diet, you have said that when you tried it for three days you did feel better and there is a history of problems with gluten in your family. When I say gluten free I would suggest not introducing all the gluten free substitutes in the beginning.

It is also possible that you picked up a bug of some kind or it may be another digestive disease such as crohns or collitis.

One thing a doctor can do for you is check your vitamin and mineral levels, vitamin deficiencies are very common with celiac, especially the B and D vitamins.

Fresh ginger tea is very good for inflammation and nausea, just take fresh ginger (organic if possible) and cut three or four pieces the size of a quarter, boil in a cup of water for five minutes or so. Peppermint tea is good for settling the stomach also.

I hope you feel better soon.

[skymgirl]

Were you tested for IBD (Inflammatory Bowel Disease) in addition to IBS? And do you know which tests they ran for Celiac? There is an entire panel they should run, a lot of time doctors can be neglectful in ordering the whole panel, they just order one or two tests. I would ask to see a copy of the report from the lab so you can see exactly what was tested.

Celiac can be a hard disease to diagnose, as are IBDs. Many people can go 10+ years before getting diagnosed b/c doctor's don't recognize their symptoms or the tests are not always accurate. If you're going to be pursuing testing for Celiac with a different doctor, I suggest staying on a "regular" (gluten eating) diet until the tests have been completed, because being gluten free can definitely effect your results. Your body can also be a strong diagnostic - if you find your symptoms go away when you're on the Gluten-free diet, that could be a huge indicator that gluten is your problem.

Although it can be frustrating and upsetting to try go through tests when you just want to feel better, I think it's important to try and see the tests through so you can get a definitive word on what's going on. If all else fails, then you don't need a prescription to try the diet and see how you feel.

Good luck, I hope you are feeling better soon!

[leadmeastray88]

Hi there,

You already got some great advice.

I agree with skymgirl that it would be wise to do some more testing just to rule out other things. If nothing shows up, there's nothing stopping you from trying the diet. If you feel better, you have your answer. Many people here are self-diagnosed solely by positive response on the diet and are very comfortable with that decision. However, if you think you'll need a definite diagnosis to keep to the strict diet, then definitely get ALL the tests done before going gluten free.

Good luck

[mjhurd31]

So there is a strong chance the blood test might not be accurate? I am not sure which ones they did. I didn't know there was more than 1 until today reading this forum.

In regard to diet...

Just starting out, is it best to cut everything out and just eat the basics (chicken, fish, rice, fruits & veggies), then slowly reintroduce additional things to test reactions?

Any advice on that?

Thank you so much everyone for the quick responses. I have learned more on here in 5 minutes than I have in months of doctor visits.

[leadmeastray88]

Hi again,

Yes there are 5 tests they should run:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

And no, none of them are 100% accurate. In the Post-Diagnosis thread, one member posted today that they had negative bloodwork but an extremely positive biopsy; almost no villi left. Just goes to show you!

With regards to the diet, many people find that they feel better quicker on a very simple diet such as the one you mentioned. Also, many people find that cutting out dairy and soy for the first little while also speeds healing as they are hard to digest. Then once you've healed a bit, you can re-introduce them and see how you feel.

Hope that helps!

[mushroom]

The additional testing normally done for celiac, besides the full celiac panel, is an endoscopy by a gastroenterologist, where they visually inspect the lining of the small intesting and take biopsy samples to see whether the villi (small hair-like protrusions) are flattened. However, this test too is not completely accurate and can give false negative results, just like the blood test. Some doctors will give you a celiac diagnosis on the basis of positive response to the diet alone, others will not.

Just a few days of not eating gluten should not have affected your blood tests. A couple of weeks could. If you plan on more testing you must continue eating a full gluten diet until testing is finished, because a gluten free diet precludes accurate results. However, if you are happy with not having the diagnosis then the best test is to try the diet. And yes, often other intolerances show up (soy for me), so it is best to just do the basics to start with, no substitute grains, none of the other known allergens like soy, corn, dairy. This would be the most likely way to show positive improvement with the diet. If you have improved with this diet, then you know you should not eat gluten, whatever the diagnosis. You can then try (one at a time) adding back in the other things and see how you react to them--give it a couple of days at least for each one because sometimes the reaction is delayed, sometimes it depends on how much of it you eat, i.e., the more you have the worse the reaction.

Good luck whichever way you decide to go.

P.S. Edited to say, cross-posted with Kim.

[mjhurd31]

Thank you all again for everything.

I think it is time to commit to the diet. I'll post back in a while once I see how it works (or doesn't).

At this point, doctor just seems like a last resort. I feel they haven't done anything except exude apathy, and at some point I guess it is better to try and take health into your own hands.

-Mike

[skymgirl]

Thank you all again for everything.

I think it is time to commit to the diet. I'll post back in a while once I see how it works (or doesn't).

At this point, doctor just seems like a last resort. I feel they haven't done anything except exude apathy, and at some point I guess it is better to try and take health into your own hands.

-Mike

I would use caution w/some of the symptoms you've been having to at least rule out anything going on with a doctor first. Just for the fact that you could have something like Crohn's or Colitis which both have shared symptoms of Celiac. I have both Celiac and Crohn's and while being gluten-free "cures" my Celiac, it can't cure Crohn's, which I need to be on medication for. I was quite surprised to find out I had Crohn's - I thought Celiac would be the end of my problems. But I am happy (well, not happy, but I can't think of another word) to know about the Crohn's because it is a serious thing that I might not have known about had I just done a gluten-free diet on my own.

So that's my cautionary note - I wouldn't just try the diet and close the door on the possibility of another condition besides Celiac without first ruling out other things. Like I said before, I know it can be frustrating to go through tests or find a doctor who you can work with, but I would give that a try before trying the diet. You can always go gluten-free if your testing still comes out negative, but if you go gluten free and then want to pursue testing, you'll need to go on a gluten challenge, which can be quite torturous.

You can check out the doctors topic to see if you can find recommendations for a doctor in you area who other members have been happy with, you have a good shot at getting one who knows what to look for that way.

I'm only giving advice based on my own experience, you are (of course) free to take it however you like. Good luck on your journey - I hope it brings you wellness soon!

[rinne]

So there is a strong chance the blood test might not be accurate? I am not sure which ones they did. I didn't know there was more than 1 until today reading this forum.

In regard to diet...

Just starting out, is it best to cut everything out and just eat the basics (chicken, fish, rice, fruits & veggies), then slowly reintroduce additional things to test reactions?

Any advice on that?

Thank you so much everyone for the quick responses. I have learned more on here in 5 minutes than I have in months of doctor visits.

That diet is the best way to go in the beginning but that is just my opinion and I am not a doctor.

Lots of good advice above depending on how you want to go, I chose to go gluten free the day I understood what celiac was and my family connections to it. I have not gotten well on a gluten and dairy free diet and am now trying the Specific Carbohydrate Diet with better success, there are a percentage of celiacs that do not heal by just going gluten free, hopefully you are not one of them.

My choice was also based on having been in pain for about two years before my digestion collapsed and a variety of tests that showed nothing. I now think that the problem with the tests being done is that they do not diagnose a problem until there is damage from the problem. It is my feeling that prior to damage being done we are ill and we know are ill but we can't get help because we can't be diagnosed.

I think taking charge of one's health is a smart thing to do. And sometimes that means finding health care professionals to help.