New Here And Not Sure What To Think

[5littlemonkeys]

Hi all! I'm hoping someone might be able to help me here. A little background-10 year old daughter has always had pretty bad eczema and my pediatrician has recently decided she also has psoriasis. We have tried all kinds of topical medicines, steroids, changing soaps/shampoos/laundry products, etc as well as having allergy testing numerous times. Nothing has ever shown up on the allergy tests, changing soaps, etc never helps and the meds only give temporary relief before they stop working. A friend of mine has a daughter with Celiac. She suggested trying dd on a gluten free diet to see if it helped. We did for about 2 weeks and there was no change and dh insisted she go back to a normal diet as it was expensive and difficult. A few weeks later she started having stomach cramps off and on mostly in the evenings/nighttime. We noticed that they seemed to happen on nights she had had milk or dinner had a lot of dairy so we removed dairy from her diet. The stomach cramps went away and her skin cleared up. We thought we had found the magic wand to fix our problems. Well a few weeks into the dairy free diet her skin started flaring up again. Then she started having pain in her shoulder. She plays softball so the dr sent her to an orthopedic for xrays. Ortho decides she has a stress fracture in the growth plate in her shoulder. I didn't buy that. After researching I found that these type of fractures occur mostly in boys who are baseball pitchers. Its the repetitve overhand throwing that causes it. Dd doesn't throw enough for that alone to cause a stress fracture. After more research and talking to my friend I decided to talk to the ped about testing her for Celiac. I have a wonderful ped who said it was entirely possible and ordered blood tests. She ordered a Celiac Panel as well as multiple other tests. The Celiac tests were negative. She did have indications of inflammation as well as a positive ANA (she has had the positive ANA in other blood tests before but the ped said we would take a wait and see approach). So the ped decided dd needs to see a rheumatologist. She is concerned that dd is developing psoriatic arthritis. We go next week. In the mean time dd's stomach aches have gotten more frequent. She was up last night until 5:00am with one. She had not had any dairy-we are very careful about that. I am so tired of losing sleep, and having all of these issues. I don't know what to think. Could she actually have Celiac even though the tests were negative? I really just want some answers and don't know what to do at this point. Any advice/thoughts? Thanks!

[mushroom]

Hi, and welcome to the board.

I am sorry to hear your daughter is having undiagnosed problems. I think, between you and your doctors, you may have just about reached the right diagnosis. :)

First question is, have you ever tried her gluten free and dairy free at the same time? Because to answer your question, it is possible to test negative for celiac and yet still have it. There is a 20-30% false negative rate on blood testing (and about the same on endoscopy and biopsy, depending on the skill of the physician).. Leading on from this, if she was false negative she will most likely have damaged her small intestine,where the enzyme to digest milk is manufactured, at the tips of little projections called villi. The villi are the first parts of the intestine to be damaged by gluten, which leads to lactose intolerance. Thus, if she continued with dairy products while gluten free it is possible she would not notice an improvement, since the symptoms can be similar.

And, it also is not unusual to suffer worse symptoms from gluten after being off it for a while and then reintroducing it.

As one who suffers from psoriatic arthritis, it is not a fun diagnosis. But the good news is that if you catch it early it can be reversed with a gluten free diet. It is not guaranteed (did not work for me, but I was too far along). With psoriatic arthritis you can have very high sed rate and CRP blood work indicating a high degree of inflammat (caused by both the psoriasis and the arthritis - and the gluten in the gut), but test negative for RF (rheumatoid factor).

My arthritis started in my shoulders, and then wrists and hand before moving to my feet. I did not develop the psoriasis until later and did not connect everything to diet until quite a bit later. I have never been tested for celiac but I cannot eat gluten now (and now a number of other foods). I was lactose intolerant for several years before I quit gluten. So I have walked down the street your daughter is on.

I am glad you are going to see a rheumatologist. I hope you get a good one who understands the relationship between celiac and rheumatoid/psoriatic arthritis - both are autoimmune diseases and are in fact quite closely linked.

I wish you daughter good luck with her care and treatment. I hope you do trial her on a gluten and dairy free diet -- IMHO the sooner, the better as you will have the greatest chance of reversing this disease before it takes hold (a cautionary tale from one who knows )

[bartfull]

My main symptom is psoriasis. It seems that CORN is the culprit in my case. If you put your daughter on a plain meat, plain fruit and vegetable diet (avoid ALL processed foods)and her psoriasis starts getting better, you will be where I'm at now - not certain what is causing it, but on the right road. Could be wheat, could be dairy, could be corn. Or soy or fructose, or LOTS of other things. Just try the plain meat fruit veggie thing. Once her psoriasis clears up you can slowly try reintroducing foods and see if she reacts.

[bartfull]

Oh yeah, I meant to say, if fructose is the problem (and it might be), make sure the fruit she eats is something with low sugar, like blueberries or bananas. Keep her away from carrots and sweet potatoes too.

[T.H.]

I'd agree with everyone here: it could be celiac disease, yes. And could be something else too, yes. the stomach problems seem to be common for a lot of us with food issues of some kind or another (surprising how often doctors don't investigate this too much. You'd think stomach pain would equal 'investigate what is going IN the stomach' first, but that logic doesn't seem to play well with docs. )

A question re: going gluten free: how gluten free was your daughter? Did you drop only obvious gluten, or drop obvious gluten plus all ingredients derived from gluten, or all of the above AND avoid gluten cc?

An acquaintance of mine went through the same thing herself recently. She tested negative for celiac disease, negative for other issues, but her doc - who specializes in celiac disease - wanted her to try the gluten free diet anyway. She did it for a couple weeks and noticed no change.

Her husband works with mine, and they knew I'd gone through a lot of health stuff, so they got in touch with me and we had a long talk. She had never eliminated gluten cross contamination from her food, because she didn't feel that it would make that big a difference. Based on how much I react to gluten cc, she decided to give the diet one more trial, being much more careful to avoid her food touching ANY gluten, or her processed food having touched any gluten food. And on that one, within days, her symptoms started going away.

She's been doing this a few months now, and all her symptoms are gone.

I'm not saying that this IS what happened with your daughter, but just wanted to mention it because if you tried the diet but didn't fully eliminate cross contamination, it might not have made enough difference to really notice.

Also, with my daughter - she was diagnosed because I insisted on the test. But on the diet, she didn't improve much at all the first week or so. I had just been diagnosed with food allergies at that point, so we took her off the 8 major allergens too, and within a week or so, she had a big improvement. We had to do some food journals for us to slowly work towards figuring out what foods WERE the problem, but she's doing much, much better now. Gluten OR her bad foods cause her issues, now.

With other celiacs on this board, the most common foods I've seen mentioned as issues have been dairy, soy, corn, and nightshades, I believe.

Oh, and re: the gluten free diet - how much gluten free processed food was she eating? gluten-free food is actually not completely free from gluten. The term just describes a maximum amount of gluten that is allowed for a food to be labeled 'gluten free,' but it still has gluten. Also, in the USA (didn't know where you are), we have no law regulating the term gluten free, yet, so a lot of companies will call their food 'gluten free' when they haven't even tested it to see if it has the low level required. Some of these can still make people react.

Also, people have varying degrees of sensitivity to gluten, so for some of us, we react to lower levels of gluten than others do. Or in other words, if we eat too much processed gluten-free food, we're likely to still get enough gluten to react.

And another fun issue for celiacs to deal with: some of us are also 'oat sensitive.' In this case, we react to oats, even gluten-free ones, about the same way we react to wheat, rye, and barley. Many gluten-free companies either use gluten-free oats, or process them on the same equipment, and will keep us sick until we stop eating them.

So....lots of variables to try out when doing a gluten-free diet - usually good to try it with just plain foods like fruits, veggies, and whole meats for a little while. Cheaper and easier, if not as tasty as processed foods, ya know? :-)

And...I should probably stop now before this post gets far too long, LOL. Hoping you can find out what's getting your little girl soon!

[5littlemonkeys]

Thank you so much for all your replies! To answer some of your questions...No we didn't try gluten free and dairy free at the same time. The stomach aches came on after our gluten free trial and we thought it was dairy only. As far as processed gluten free foods go...I don't think she was eating too many of these. We did get some Udi's bread and she was eating Chex cereal for breakfast some. I'm pretty sure these were the only processed foods she was eating at the time. I don't remember how careful I was with cross contamination. I know she had her own jar of peanut butter so there was no chance of bread crumbs getting in there etc.

We went out to dinner tonight and her stomach started hurting after she had eaten the bread they served before the meal. We started going over what she had eaten yesterday since she had such a rough night. It was a lot of gluten! Waffles, sandwich, pasta, brownies, etc. So we have decided to go back on the gluten free diet effective immediately. Dh is totally on board this time so that is good. Dd will be disappointed though as she was hoping to be able to have dairy again now but it sounds like she needs to remain dairy free as well, at least for a while.

I'm very hopeful about the rheumatologist we are seeing. She is a pediatric rheumatologist as well as a pediatric allergist. This seems like a good fit for our situation. She is at a major teaching hospital about three hours away from us. We have a wonderful Childrens Hospital locally but we have no pediatric rheums. There are only 2 here that will even see kids and they hold a clinic at our childrens hospital one day a month. We couldn't get in with one of them until next April! My ped felt this was completely unacceptable and got us the appt with the one we are seeing next week. I so hope we get some answers! Thanks again for your help!

[PadmeMaster]

My mom is DXd with Psoriasis (along with other things.). She's been gluten free for less than 24hours (I know; I bought her snack last night), but I'm hopeful that it will clear up for her.

I myself, though, had bad dandruff for years. NOTHING cleared it up. I recently switched back to head and shoulders shampoo after getting fed up with Aussie and Tresume (neither will clean my hair after a while; it seems to get conditioned to them) and with my dandruff. I use extra on the worst spot on my head. Even now, over 48 hours since a shower (I should fix that...), I'm not very itchy and the spot that gets the worst isn't covered in grease and dandruff. I don't *have* to wear a hat or pull my hair up to leave the house. Head and Shoulders has *never* worked for me before, so for it to work is amazing and can only be thanks to being gluten free.

BTW, at two weeks gluten-free I was still laid up in bed unable to walk (my main issue is joint pain, although others appear when I do get glutened). So she may just need longer. I told my mom a month or two (Although *I* saw symptoms leave after 3 days with her She just didn't keep it up at first)