New To Forum, Daughter's Labs

[Jlt18]

My daughter is 11 had developed Psoriasis at age 10. She has list of symptoms: thin,

weak, headaches, heat & cold intolerance, dry skin, top of hands crack in winter, cold hands ,no endurance with exercise, dark circles under eyes, dry hair, hypoglycemia-cannot tolerate sugar without headache aches, Dairy-lactose intolerant, nut & peanut allergy, sometimes constipation, tummy aches younger (ate tums), picky eater, loves pasta, bread, rice...

Her thyroid labs are a bit up for TSH 3.24 (range is .30-4.0). I have autoimmune Hashimotos and she and I look alike, very thin.

So my question, sorry a bit long here:

Celiac panel:

(tTG) Ab, IgA <3 negative <5

endomysial Ab IgA test not performed NEGATIVE

endomysial Ab titer test not performed NEGATIVE

IgA 287 H (64-246)

Does this mean anything? Pediatrician called and told me all her labs were "normal" and I went by to pick up copy of labs. I found some things out of range. Does she need to test positive on all the antibodies?? I know nothing about this disease. I appreciate your help!!! What to do next?

[Ursa Major]

The doctor didn't order all the labs, which is bad. Her IGA is elevated, which could be pointing towards celiac disease. Plus, the blood work is not very reliable anyway and misses many people with celiac disease, and many more with non-celiac gluten intolerance (which is just as bad).

Her TSH is elevated. Your lab uses outdated ranges, anything above 2.00 is suspect and points towards hypothyroidism. Was she tested for thyroid antibodies? Did the doctor order Free T4 and Free T3? If not, that would be advisable.

My suggestion is to try and talk your doctor into prescribing Armour (dessicated thyroid in Canada) to see if it will help. If you are in the US, you can buy dessicated thyroid in the health food store.

It is your choice to put your daughter on the gluten-free diet to see if it helps, no doctor can stop you. If your daughter agrees to try the diet and you are sure she won't cheat outside your home, that would be the best thing to do.

[Jlt18]

Thank you. I have spent the last 3 months learning tons about hypothyroidism. I have had Hashi's x 15 years and eventually got adrenal fatigue. I got off synthetics this Dec and now take Armour and supplements. (I feel wonderful!-sad I suffered for so many years) I had her antibodies tested for thyroid, doctor said I was "nuts" to want the test. Antibodies negative. She refused to order the frees! She would not order vit d, b12 or folate. She basically caterogized my daughter as a worrier and I should look at behavior modification. Obviously we are switching docs. She will see my family doctor who knows how to order proper tests and uses Armour! I just thought a pediatrician would be best-wrong!

Okay all she ordered was a "celiac panel." So obviously not thorough. Unfortunately I am not educated YET on the celiac dis/gluten stuff. My daughter is struggling due to all she has to do for the psoriais, creams, vitamins, Keflex...I wish she could just be a kid.. I haven't discussed with her the gluten issue yet. I want to become more educated and then convince her to give it a try...she is so picky, hardly eats vegetables. She will eat some fruit. She does do meat and fish. She feels best with protein. To give up pasta, bread - oh my!!!

What blood tests should she have? What about enterolab? What kind of doctor do we see?

Thanks! Sorry, I am just learning about this. I need to do a lot of reading! I appreciate your guidance!!

[Ursa Major]

Your daughter is already 11 and will soon not be a child any longer. I never had a pediatrician for any of my five kids, just saw my family doc with them. It sounds like that would be your best bet with her. Who needs doctors like that arrogant, ignorant ped doc she saw!

Many people with dermatitis herpetiformis (caused by celiac disease only) are misdiagnosed with psoriasis. Plus, celiac disease can also cause other skin problems, including psoriasis. I used to have psoriasis, and it cleared up on the gluten-free, casein free diet (it can also be caused by dairy, in fact dairy is responsible for many skin conditions).

Enterolab would also be a good choice for testing and is much more sensitive than blood tests.

The tests you asked for are good ones to do. Try having them done by your family doc. Also, you might want to have her tested for ferretin and hemoglobin levels. I can't believe any doctor would refuse to have those tests done! What a jerk.

Your daughter does not have to give up pasta on the gluten-free diet. There are many excellent brands of rice pasta that are just as good as wheat pasta. When I serve pasta to guests nobody even realizes that it is gluten-free! One daughter (who doesn't eat gluten-free at home) even prefers the rice pasta, she likes the taste better than wheat pasta.

Bread is tricky, but many here have found bread they like. Cookies and cakes that are baked with gluten-free flours are every bit as good as the ones containing gluten.

She might be picky because food hurts her stomach. She may need the protein meat provides for energy. I've always liked meat best, and even though I eat a lot more vegetables now, I still need more meat than most people.

My 16 year old youngest daughter refused to try the gluten-free diet, because her blood panel came back negative also. But when the Enterolab results showed a high malabsorption score, plus antibodies to gluten, she relented and has now been on the gluten-free diet for several months, and doing much better.

You may need to order the Enterolab tests to convince her of the need to go gluten-free (if it shows that gluten is a problem, which obviously, it may not). But it might also show a casein intolerance, either by itself, or in combination with a gluten intolerance.

Psoriasis is a symptom. All skin problems are symptoms of other underlying issues. You are right in trying to find out the cause of your daughter's problems! Don't give up until you have found them. I know it is tough, and you will need to fight for getting the answers. But it will all be worth it in the end.

[Jlt18]

Wow are you knowledgable!

I fought for ferritin and it was 36 (9-120) I know it shoud be 50-70 or so right?

hemoglobin 14.9 (12-15) so good

iron 82 (28-136)

Is casein free mean no dairy? My daughter has a dairy allergy and is not suppose to have any, but she cheats...she has a little cheese and a little ice cream at times.

enterolab - is that out of pocket? I haven't looked into yet...just heard of it. Is it the best way to determine she has celiac disease?

I am thinking of taking her to a nutrionist, someone who knows, about all of this, can explain it to her, and then she may give it a try. I am already the mom who makes her put creams on for her psoriasis, take her Keflex and supplements, do her homework, do the piano, etc...I think she sees me as the bad guy. If it comes from another educated professional and explained in terms she understands, and even learns her psoriasis could be gone..then she may comply. You know how much fun puberty is, ha! Meanwhile I will read, learn how to provide gluten free foods, etc...I am just trying to find a way that she becomes part of the plan, not a plan that is being forced on her...I know you understand.

Now when the test results say "test not performed" on the labs sheet, is that because the initial (tTG) Ab, IgA was <3 which is negative. So they didn't run the endomysial ab IgA? or Titer?

Part of me knows I don't need these tests to do the treatment. It seems looking at what comes out may be a good way to see absorption issues. She is only 80 # and very tall. Fragile looking...

Okay PLAN: go to my family doc and get T3, T4 frees, vit D, B12, folate, anything else?

order lab test from enterolabs

find good nutrionist to educate us and come up with plan for meals, snacks, etc

Meanwhile I start learning about what products are available to substitute. You give me hope!!! I am thinking I may eliminate it too to see how I do. I am lactose intolerant I believe. I am thin too!!

Oh just to add to the fun - our pediatrician also told us that we don't need to worry about Vit D living in AZ-I just had to laugh!!

[Jlt18]

"Gluten Sensitivity Stool and Gene Panel Complete ($369)" from enterolab

Is this the test I should order? Is it possible to send this into insurance for reimbursement?

Thanks!

[Ursa Major]

Most doctors are so ignorant when it comes to nutrition. If your bowels are damaged, they don't convert sunshine to vitamin D. It doesn't matter how much sunshine you get, with celiac disease you can be severely vitamin D deficient anyway.

Enterolab can't diagnose with celiac disease, as most doctors won't diagnose it without a positive biopsy (even though in reality the majority of people with celiac disease are missed that way). But they can diagnose a gluten intolerance, and tell you what your genes are. As well as show if there is malabsorption and an immune reaction to gluten.

If your daughter is very close to being 100% dairy free, that result won't be accurate and probably be negative. It was for my daughter. She is also dairy intolerant and cheats at times. Her result for dairy was 9 (positive 10 and up), which shows she isn't compliant (otherwise it would be lower).

Some insurance companies will pay for Enterolab testing, but most will not. But if it will convince your daughter that she needs to be gluten-free, it would be worth it, right? Yes, the complete panel is the best way to go.

It seems to me that certain tests weren't performed because the doctor didn't order them. They are part of the celiac disease panel, and should be performed even if part of it is negative, if the doctor has ordered it.

If they didn't do it because they didn't think it was needed, based on other tests despite doctor's orders, then they acted very unprofessional.

Why don't you take your daughter shopping with you? Show her the gluten-free foods available and let her choose which ones she wants to try. Make sure to tell her that she may not like them all, but you would be willing to let her keep trying all the ones she is interested in until she finds her favourites.

Also, the normal supper foods, like potatoes, rice, vegetables, meat etc. are gluten-free anyway. You can thicken gravies with corn starch or light buckwheat flour (my favourite), and nobody ever knows the difference.

If you serve lasagna (or spaghetti) with rice noodles, she may not even notice!

Bake some gluten-free cake, muffin and brownies from gluten-free mixes and serve them to her. If she tells you how good they are, you can tell her that they are gluten-free. It would prove to her that eating gluten-free is not the end of her life, and can be delicious.

There are several good cereals that are gluten-free. Just note that Kellogg's cereals all have barley malt and are not gluten-free.

It would be a good idea for you to go gluten-free together with your daughter. It is genetic, and she would have inherited from somebody. You never know, you may be feeling much better gluten-free. Plus, your daughter wouldn't feel that you make her do something you aren't willing to try yourself. And you wouldn't be eating things she wants in front of her. Which is a biggie.

[Jlt18]

Thank you, we have a Trader Joes near our house and I saw a brownie mix that was gluten free. I will try some gluten free pasta too. I always blamed the carbohydrates as making her feel bad. She loves pasta but without protein she gets headaches and feels bad. Now I wonder if it was gluten the whole time making her feel bad? Oh she also has a nut allergy. Just to make life more fun!!

Should I make changes now or what until we do her test with enterolabs?

I so appreciate your help! I left the doctors feeling lost and not sure what to do next. I will schedule an appt with the family guy, did you think I needed to order any other labs? I made a short list. I want to get them all done right this time...

Gosh if she could get rid of psoriais I think she would be willing to change her food...yes I will do it with her. It will make her feel better! Now I am thinking what will I miss most (oh those pita chips with hummus!) Tortilla chips?

A big thank you!!!

[Ursa Major]

The Enterolab tests will be accurate up to a year after starting the gluten-free diet. So, you don't need to wait until after you get test results to eliminate gluten.

Yes, corn chips, tortilla chips, potato chips (make sure they are gluten-free, only plain ones are safe) can be used with hummus.

I hope you get it figured out and you both feel better.

If you will eat gluten-free bread, make sure you buy a new toaster, as even with cleaning the old one won't be safe to use. The same goes for plastic colanders that have been used to drain wheat pasta, and wooden spoons and wooden cutting boards, as well as scratched non-stick pots and pans.

Also, replace all gluten containing personal care products with gluten-free ones, such as shampoo, conditioner, soap, lotion etc. Watch out for wheat germ oil, barley extract, oat bran.

I find that I get psoriasis on my scalp from shampoo that contains wheat germ oil.

[Jlt18]

So helpful! Okay this seems doable. I just got back from the store. It is nice that it will say gluten free on the packaging. I will go to a whole foods store and get some other items. I found brown rice pasta tonight and some good rice chips/crackers.

Thank goodness my daughter loves salmon and corn. So that is an easy dinner! She also loves rice.

Okay good I can start now and still do the test! Thanks for the tip on the toaster and strainer!