A Wondering Medical Student

[BlueMerlin]

When I went over the GI unit at my school, I realized my wife probably had celiac disease. However, the internet is a big place, so I figured I could ask some experts questions that have been bugging both of us about the disease. For starters, her symptoms, which she has had for many years:

Chronic diarrhea, psoriatic arthritis, irregular menstrual cycle, depression/mood swings, and I also suspect malabsorption (anemia, skinny as a twig, etc). Plus, her doctor said she probably has IBS, but he's made some pretty major mistakes before...

We've been gluten free for a while now, and the first 2 weeks had a huge benefit, with almost complete regression of bowel and psoriatic symptoms. However, she ate some wheat accidentally at Thanksgiving, and the symptoms returned viciously the next day. The problem now is that her symptoms have continued with no improvement due to the diet.

Input?

(My ideas include a possible dairy problem as well)

[eatmeat4good]

When I went over the GI unit at my school, I realized my wife probably had celiac disease. However, the internet is a big place, so I figured I could ask some experts questions that have been bugging both of us about the disease. For starters, her symptoms, which she has had for many years:

Chronic diarrhea, psoriatic arthritis, irregular menstrual cycle, depression/mood swings, and I also suspect malabsorption (anemia, skinny as a twig, etc). Plus, her doctor said she probably has IBS, but he's made some pretty major mistakes before...

We've been gluten free for a while now, and the first 2 weeks had a huge benefit, with almost complete regression of bowel and psoriatic symptoms. However, she ate some wheat accidentally at Thanksgiving, and the symptoms returned viciously the next day. The problem now is that her symptoms have continued with no improvement due to the diet.

Input?

(My ideas include a possible dairy problem as well)

It might be the secondary intolerances. I had a huge and immediate benefit on going gluten free it lasted about a moonth. The second month struggled with the secondary intolerances, Dairy, Soy, Nightshades. I am sure it is disheartening to her to be sick again. Please don't stop trying though. There are a lot of good knowledgeable people here who will give you a lot of information about cross-contamination too. I am just starting my third mmonth and still struggling to get rid of other intolerances. I thought "It won't happen to me" but it did. Go as plain and simple as possible, meat, vegetables, fruit, nuts. Too many gluten free substitute baked goods make me really sick. Just thoughts from someone else new in recovery. Good luck to you and your wife. She is lucky to have your support. Stay strong.

[ravenwoodglass]

She does sound like she is one of us. After we go gluten free reactions can be stronger and last for a while. The antibodies need to calm down again. Make sure you are taking precautions against CC. She needs a new dedicated toaster, replace scratched cookware, replace your colander and make sure she has her own condiments, nut butters, jellies, mayo etc. If you are continuing to eat gluten make sure you brush your teeth after eating or drinking a gluten item before any kissing. She also should check any makeups and toiletries she uses.

That said if she is going to want to be diagnosed by a doctor she needs to go back on gluten for testing. If we can help in any way please feel free to ask any questions you need to.

[nora-n]

The reason that reactions are much stronger after going gluten-free, is "freshly activated T cells".

They are actually researching this for a possible celiac test.

Only celiacs have these freshly activated T cells.

One must be gluten free for at least one week and then consume gluten, in order to trigger them.

[Skylark]

Dairy is worth considering, as is soy. Also, some celiacs are much more sensitive to traces of gluten than your medical training may lead you to believe. I always suggest celiacs who are having problems switch over to a gluten-free/casein-free diet and eliminate as many processed foods as possible. It really helped me. Basically, you eat things you can look at and tell are gluten free, like an apple, a potato, fresh produce, meat you cooked yourself, nuts in the shell, and so forth. Eat a zero gluten diet, with no chance of cross-contamination or social misunderstandings for a time. If she feels better then you can try adding the processed foods back. The reason I suggest avoiding processed foods is this:

Open Original Shared Link

By the way, celiacs are very typically diagnosed with IBS. It is more of a symptom of underlying GI problems than a disease and we like to say it's an abbreviation for "I've Been Stumped."

[shopgirl]

It can take longer than 2 weeks to feel better. I felt great for a couple weeks and then dipped down again. I assumed it was other intolerances but cutting out other foods didn't do anything. I found I just needed more time. I feel a little better every day

[mushroom]

Gluten causes damage to the body, and the body has to recover from this damage before the digestive system is going to work properly again. Healing takes different lengths of time for different people and often depends on how much damage has been done. And it is not a straight-line process - there will be ups and downs and bumps along the way. As a fellow psoriatic arthritis sufferer I have sympathy for your wife. It amazes me that rheumatologists do not know more more about celiac disease.

[ravenwoodglass]

It amazes me that rheumatologists do not know more more about celiac disease.

Yea me too. Then perhaps my hands wouldn't be so lumpy and I wouldn't have been given 2 different arthritis drugs that have since been pulled of the market. Hopefully as more of us are diagnosed in this country there will be more recognition of symptoms outside the scope of the just the GI ones.

[chasbari]

Yea me too. Then perhaps my hands wouldn't be so lumpy and I wouldn't have been given 2 different arthritis drugs that have since been pulled of the market. Hopefully as more of us are diagnosed in this country there will be more recognition of symptoms outside the scope of the just the GI ones.

I agree here. That is another reason the reaction to the accidental glutening is taking longer as well. It, being an autoimmune response, is not something that just works through the system (ie: intestinal tract) and is over. It sets up a cascade of autoimmune responses. I got had by something the last week and have had everything from nosebleeds to arthritic flares that have left me barely able to stand on my feet. Have you thoroughly vetted all soaps, shampoos, toiletries? I know some here feel this is not a factor but there seems to be a feeling that dermal exposure is enough. Some contend that it has to come in contact with the lining of the small intestine to trigger a response. I get in trouble if it contacts any mucosal lining. Wasn't careful enough to double check my old stage makeup and it seems that is what got me last week. I hope your wife joins and reads up on all the helpful advice here. It was my lifeline in the early days of coping with how maddening it was to go through all the adjustments. Keep it simple. I went on a challenge diet that is essentially (although not strictly) paleo for a lack of a better way of describing things. It made compliance almost a no brainer.

CS

[BlueMerlin]

Thanks for all the advice, and I'll let you know if anything else comes up!

[beebs]

Gluten causes damage to the body, and the body has to recover from this damage before the digestive system is going to work properly again. Healing takes different lengths of time for different people and often depends on how much damage has been done. And it is not a straight-line process - there will be ups and downs and bumps along the way. As a fellow psoriatic arthritis sufferer I have sympathy for your wife. It amazes me that rheumatologists do not know more more about celiac disease.

I have been seeing a rheumy for 4 years with a mish mash of crazy symptoms. Basically she is treating me with plaquenil but doesn't know what I have or why. Doesn't seem to matter that I have a family history of celiac. I have psorisis in my nails and arthritis although nothing connected or diagnosed yet - the best we can hope for it "Undefined Connective tissue disorder" at this stage. I have lost 50 pounds but apparently a neg genes test is enough to rule Celiac out as any kind of possibility.

It is true- alot of the time the right hand doesn't seem to talk to the left in the medical world. Unless you are lucky enough to stumble on a really really great Dr who knows anything about gluten at all then you are basically on your own to figure things out!

[mushroom]

I have been seeing a rheumy for 4 years with a mish mash of crazy symptoms. Basically she is treating me with plaquenil but doesn't know what I have or why. Doesn't seem to matter that I have a family history of celiac. I have psorisis in my nails and arthritis although nothing connected or diagnosed yet - the best we can hope for it "Undefined Connective tissue disorder" at this stage. I have lost 50 pounds but apparently a neg genes test is enough to rule Celiac out as any kind of possibility.

It is true- alot of the time the right hand doesn't seem to talk to the left in the medical world. Unless you are lucky enough to stumble on a really really great Dr who knows anything about gluten at all then you are basically on your own to figure things out!

Do you test out as RA sero- negative or positive? I am negative as are more PsA sufferers. I was treated with Plaquenil for a couple of years, but it drove my psoriasis crazy - made it much worse and eventually it stopped working on the arthritis symptoms too. I also have "undefined" connective tissue disorders, as does my celiac sister. My dad was 'diagnosed' with polymyalgia rheumatica but I don't believe that is what he had. You don't get that in your feet!!! and he could barely walk at the time he died. I didn't know anything about arthritis or gluten at that stage and was living in a different country. My current rheumy does not believe there is any connection between celiac and arthritis, said he has never treated a celiac patient. I asked him if he had ever tested any of them and he looked at me, like, why would I do that?? I told him that 97% of celiacs are undiagnosed because no one ever thinks to test them.

I would not put too much stock in the genetic test if they only tested for DQ2 and DQ8, as there are many other genes they don't test for that have been associated with celiac disease and gluten sensitivity, with new ones being found all the time. I assume you have had the celiac blood panel run?

[beebs]

Do you test out as RA sero- negative or positive? I am negative as are more PsA sufferers. I was treated with Plaquenil for a couple of years, but it drove my psoriasis crazy - made it much worse and eventually it stopped working on the arthritis symptoms too. I also have "undefined" connective tissue disorders, as does my celiac sister. My dad was 'diagnosed' with polymyalgia rheumatica but I don't believe that is what he had. You don't get that in your feet!!! and he could barely walk at the time he died. I didn't know anything about arthritis or gluten at that stage and was living in a different country. My current rheumy does not believe there is any connection between celiac and arthritis, said he has never treated a celiac patient. I asked him if he had ever tested any of them and he looked at me, like, why would I do that?? I told him that 97% of celiacs are undiagnosed because no one ever thinks to test them.

I would not put too much stock in the genetic test if they only tested for DQ2 and DQ8, as there are many other genes they don't test for that have been associated with celiac disease and gluten sensitivity, with new ones being found all the time. I assume you have had the celiac blood panel run?

She tested me for RA and Sjogren's, lupus and even that gene that causes joint problems...is it B27 or something? All negative. I was only tested for the two genes, not even sure if they did a celiac panel or not. I've had so many tests in the last year I have lost count. I have lost 50 pounds in about 18 months - that is the only good thing about this ....whatever it is.

I don't have psorisis anywhere else except in my finger nails. Plaquenil is the pits - I got so dizzy on it and then ended up on a half dose. I am off it now due to being pregnant.

I was supposed to go for an endo at the beginning of dec. But postponed due to pregnancy as well. I hate all this autoimmune stuff- it is infuritating to know that you are going down hill fast and have no idea why.

My rheumy suggested in the beginning that I could be "stressed" and that is why I was getting ill. But even she can't deny that something is going on. I have lost about 50% rotation in my hips in a few months...ugh.

I have gone gluten free this past week as a last resort. Thanks to you guys on this forum - so thanks!

[ravenwoodglass]

She tested me for RA and Sjogren's, lupus and even that gene that causes joint problems...is it B27 or something? All negative. I was only tested for the two genes, not even sure if they did a celiac panel or not. I've had so many tests in the last year I have lost count. I have lost 50 pounds in about 18 months - that is the only good thing about this ....whatever it is.

I don't have psorisis anywhere else except in my finger nails. Plaquenil is the pits - I got so dizzy on it and then ended up on a half dose. I am off it now due to being pregnant.

I was supposed to go for an endo at the beginning of dec. But postponed due to pregnancy as well. I hate all this autoimmune stuff- it is infuritating to know that you are going down hill fast and have no idea why.

My rheumy suggested in the beginning that I could be "stressed" and that is why I was getting ill. But even she can't deny that something is going on. I have lost about 50% rotation in my hips in a few months...ugh.

I have gone gluten free this past week as a last resort. Thanks to you guys on this forum - so thanks!

Glad to hear you have gone gluten free. Hopefully that is the answer for you. I know how frustrating it is when you feel so bad and doctors don't have any answers. Your response to the diet is the most important thing so do be strict. It does take some time when more than just the gut is involved. Althought my GI symptoms resolved quickly it took a couple of months for my joint and muscle pain to resolve and much much longer for neuro issues.