Looking for suggestions

[celi kid]

First Post - Looking for suggestions. My 9 yr old daughter has Celiacs, dx 5/11 with endoscope. 7/11 diagnosed with Hashimoto's disease. Since this summer we've been on a roller coaster. Weird urinary pain/frequency (UTI symptoms - but no UTI), sore - sore muscles, extremely tired, cold, foggy mind,weight gain, irritable, sad, and diarrhea. gluten-free for almost 6 months. Synthroid for 4 months and energy has improved slightly, but other symptoms still exist. The irritability, sore muscles, and foggy mind are the most worrisome. She was a very happy, active young lady and things have changed.

The endocrinologist says her thyroid numbers are fine - must be depression. The gastro says take probiotics - which helps with the diarrhea. He also says there is still trace amounts of gluten in her body.

?'s - 1.) We've been quite diligent with gluten-free diet. Does it take months for it to clear one's system?

2.) Are these common Celiac symptoms - urinary issues, sore muscles, irritability, brain fog.

3.) When should we expect improvement?

Thanks for your advice!

Only other medical diagnosis - low vitamin D, citrus allergy

[mommida]

Healing times vary.

As for the UTI symptoms, but not really a UTI, that is something we (my 9 year old daughter) battle. The doctor has diagnosed her as constipated. (For the last 2 years) Every time she has an exam her colon has been solid. Indicated she is constipated. The "fullness" has too much pressure for the bladder to be fully emptied. It can cause a UTI. The pressure makes it feel like you still need to go.

Try to add foods that have good fiber and probiotics should help.

[pricklypear1971]

As far as depression goes, that may be thyroid or vit d.

Has she been tried on combo t3/t4 therapy? Good tsh numbers are irrelevant - she may do better on combo. Read about it on about.com's thyroid site, they also suggest good books and references there.

Vit D defficiency can affect mood, is she supplementing?

Yes, it can take a long time to heal. I will assume at 15 she is out and about a lot with friends. Has she been trained in how to screen gluten? She may be getting in it unknowingly.

[Takala]

Something is wrong here, especially with the endocrinologist suggesting "depression" when it is clearly either gluten cross contamination or accidental consumption, combined with thyroid disease which the replacement therapy is not resolving. Not resolving the underlying physical malnutrition and endocrine issues cannot be "fixed" by then treating or ignoring the depression, which is a symptom, not a cause.

Every supplement and prescription she takes must be gluten free. Recheck with the manufacturer to confirm this gluten free status. Never take it for granted. Find a cooperative pharmacist who will help get you contact information for the company. Read this thread: there is much confusion right now with these pharma manufacturers not disclosing. I would also suggest if you find out your drug does have gluten that you contact the FDA and complain. Putting gluten in meds frequently used by celiacs, and manufacturers not disclosing it, is not acceptable. People shouldn't be having to constantly fight for this info.

UTI symptoms can be caused by many different things, including consumption of gluten by people w/ celiacs. The resulting malnutrition and lack of minerals getting absorbed, can cause the body to attempt to regulate blood calcium levels any which way it can, including raiding the existing bone. Then the kidneys try to filter this extra calcium out, and the result is a lot of crystals forming in places where they should not, including the bladder, which is very irritating. What you have to do is find safe forms of calcium to take, along with magnesium and a multi- vitamin with the B complex and vitamin D. AND stick to a gluten free diet, to get healed. Then it will stop. Do not take calcium carbonate, such as in "Tums," which makes it worse. You may get some kidney docs trying to tell you that calcium supplements are bad for people with a tendency to form stones.... not for us, they don't understand why we are doing it.

Also, she should be drinking lots of water to flush the bladder out. Try adding an extra glass of water at least 3 to 4 times a day. Once when she wakes up, once in the evening sometime before bed, and then before meals. They'll tell you 6 to 8 glasses, but you will feel like you're awash. Just remembering to start the day with a glass of water is going to make a difference, along with the calcium, magnesium, D, B complex.

You would be surprised where gluten is lurking.... you may want to take the family meals gluten free or go to a gluten free kitchen at home. Indoor pets can be another source, especially if they sleep in the bed, lick themselves, or drool a lot - going to gluten free pet food helps. ( Sometimes this also improves the health of the pet because they can have allergies and intolerances, too, and they can't tell us about it, only scratch themselves silly.) Also, don't be shy about perhaps visiting the school and talking to the teachers and whoever supervises the cafeteria mealtimes.... I don't think the kid is sneaking the stuff, but there is a slight possibility she's getting exposed accidentally.

[eatmeat4good]

Oh my...I agree something is wrong here. I feel for her and for you. I just want to verify that depression and bladder urgency mimicking UTI are both consistent with glutenings and so is muscle aches. I had the UTI sense of urgency for years and years. I was on antibiotics constantly. When I went gluten free it cleared up in a couple of months. Never ever get it now unless I get traces of gluten. My son had the same problem all his childhood...all resolved a month after going gluten free for him. The depression and bladder problems....are terrible when it is gluten causing it...just miserable. Be patient with her. (I'm sure you are. I just have to say it because I know she must be miserable.) Look at everything...is there any flour in the house? It hangs in the air for a long time and can be inhaled or swallowed. I don't know what to suggest but do keep pursuing an answer...because I would think she would be better by now if it was gluten and and the gluten is absolutely out. Depression was deginitely gluten related for both me and my son. It is a despairing and profound kind of depression that only comes with gluten. No meds helped. This took a couple of months to resolve...but it certainly resolved for us by 6 months. Sore muscles were common for us too. But that also resolved after being gluten free for a couple of months. So sorry this is happening to her. Hang in there and keep advocating for her. Does anyone in the house eat gluten? It is sooo easy to get contaminated...

[eatmeat4good]

Takala- I didn't know all that regarding the kidneys and calcium...very good information. Thank you very much.

[sandsurfgirl]

Insist that all her other hormones be checked, especially aldosterone and rennin. I got low aldosterone and it made me pee so much I was hospitalized. I had many of those same symptoms. It throws off your electrolytes and really makes a mess of things. Insist on her electrolytes being checked and her vitamin D, iron and B's. Also get her cortisol checked. Make sure she doesn't have an adrenal problem. So aldosterone, rennin, cortisol, ACTH and have them do the female hormones too like estrogen, testosterone, etc.

Also make sure all your toiletries are gluten free. Shampoo can run down your face in the shower and get in your mouth in trace amounts. Soap and lotions stay on your hands and then you eat, etc.

[sandsurfgirl]

Something is wrong here, especially with the endocrinologist suggesting "depression" when it is clearly either gluten cross contamination or accidental consumption, combined with thyroid disease which the replacement therapy is not resolving. Not resolving the underlying physical malnutrition and endocrine issues cannot be "fixed" by then treating or ignoring the depression, which is a symptom, not a cause.

Every supplement and prescription she takes must be gluten free. Recheck with the manufacturer to confirm this gluten free status. Never take it for granted. Find a cooperative pharmacist who will help get you contact information for the company. Read this thread: there is much confusion right now with these pharma manufacturers not disclosing. I would also suggest if you find out your drug does have gluten that you contact the FDA and complain. Putting gluten in meds frequently used by celiacs, and manufacturers not disclosing it, is not acceptable. People shouldn't be having to constantly fight for this info.

UTI symptoms can be caused by many different things, including consumption of gluten by people w/ celiacs. The resulting malnutrition and lack of minerals getting absorbed, can cause the body to attempt to regulate blood calcium levels any which way it can, including raiding the existing bone. Then the kidneys try to filter this extra calcium out, and the result is a lot of crystals forming in places where they should not, including the bladder, which is very irritating. What you have to do is find safe forms of calcium to take, along with magnesium and a multi- vitamin with the B complex and vitamin D. AND stick to a gluten free diet, to get healed. Then it will stop. Do not take calcium carbonate, such as in "Tums," which makes it worse. You may get some kidney docs trying to tell you that calcium supplements are bad for people with a tendency to form stones.... not for us, they don't understand why we are doing it.

Also, she should be drinking lots of water to flush the bladder out. Try adding an extra glass of water at least 3 to 4 times a day. Once when she wakes up, once in the evening sometime before bed, and then before meals. They'll tell you 6 to 8 glasses, but you will feel like you're awash. Just remembering to start the day with a glass of water is going to make a difference, along with the calcium, magnesium, D, B complex.

You would be surprised where gluten is lurking.... you may want to take the family meals gluten free or go to a gluten free kitchen at home. Indoor pets can be another source, especially if they sleep in the bed, lick themselves, or drool a lot - going to gluten free pet food helps. ( Sometimes this also improves the health of the pet because they can have allergies and intolerances, too, and they can't tell us about it, only scratch themselves silly.) Also, don't be shy about perhaps visiting the school and talking to the teachers and whoever supervises the cafeteria mealtimes.... I don't think the kid is sneaking the stuff, but there is a slight possibility she's getting exposed accidentally.

Be careful with the water. She's only 9. Her water intake should be lower than an adult's. Too much water throws off your sodium and electrolytes and is bad for you too.

[pricklypear1971]

As far as depression goes, that may be thyroid or vit d.

Has she been tried on combo t3/t4 therapy? Good tsh numbers are irrelevant - she may do better on combo. Read about it on about.com's thyroid site, they also suggest good books and references there.

Vit D defficiency can affect mood, is she supplementing?

Yes, it can take a long time to heal. I will assume at 15 she is out and about a lot with friends. Has she been trained in how to screen gluten? She may be getting in it unknowingly.

Sorry, thought she was 15. Don't want her to grow up too fast ,

[celi kid]

Wow! Thank you - all of you! I feel like I just got a big hug. In fact, your posts made me teary. It has been a challenging battle, and I often feel alone. Drs and those that don't understand can make you feel like you're crazy, but I know my daughter and this isn't her.

Answers to some of your questions - we have not tried the T3/T4 combo, but I will pursue this at our appt next month. I will be sure to check with the manufacturer as well. She is on a Vit D supp - 500IU's. I confess we do have flour in the house, and I thought it was OK to still make food for the other family members. I suppose I need to totally rid the pantry.

Thank you for the hormone ideas. They did test her coritsol, but not the others. I will ask. On some of her bad days, I forgot to mention another weird thing - she gets a real puffy face?? My husband also seems to think the weather has some connection in how sore and tired she is??

One more question - any suggestions on good lists for gluten-free shampoo/soaps/toothpaste/make-up.

Thanks again!!!

[lemontree1]

From my personal experience:

False UTI: caused from medications/supplements. I can't tolerate some of the meds & supplements. I didn't get the false UTI until I started taking Levothyroxine, Vit. D, Multi vitamin, and b-complex. Something in these preparations really messes with my system. I also don't tolerate natural dessicated thyroid or cod liver oil. My body makes the thyroid antibodies, so I do have thyroid disease, but I think I'm only in the beginning stages (the tests are once again in the normal range and were only barely out for a little while) so it is not as important that I supplement for that at the moment. If your daughter really needs to supplement, it may be worth it to experiment with different preparations. I bought a "lizard lamp" from a pet store to get my daily dose of vitamin D, take a sublingual B12 and Slow FE.

Depression, brain fog, most of my fatigue, kidney pain, etc, have eased tremendously after going gluten free (about 5 weeks now for me).

Flour could be a big issue for your daughter. I know it is for me. Just walking through a grocery store where flour is in the air (bulk foods, baking aisle, bakery) and I get ataxia.

[Roda]

You have got great advice from the other posters. If she is still having these issues I would look at any possible ways she could be getting cross contamination in the house. You mentioned you still are using regular flour. It might be necessary to make the house gluten free or a restricted shared house. I do have a shared house, but my husband is very careful. We share most everything, except his cereal, bread, crackers, etc. of course, but with rules. We share condiments by either having squeeze bottles or he spoons out what he wants and does not ever double dip. We share lunchmeat and cheese. He takes what he wants and puts it away before ever touching his bread. He has a dedicated section in the pantry, fridge and counter just for him. Otherwise everthing else is gluten free. So if you have anything like that that may be CC'd let the others use it up or buy her own separate stuff. I would recommend getting rid of the flour and any other baking items that could be cross contaminated from double dipping. Replace spice/herbs that may be also. I won't allow any baking in the house with regular flour. It can stay airborn and settle back down on clean counters. I bake everthing gluten free and if hubby wants something I can't or won't make he goes to the bakery. Does she have her own toaster and pasta strainer? Very important to have her own. Also don't use old wooden cutting boards or scratched plastic ones if there was ever gluten on them. Too hard to clean. If you take the whole house gluten free, then the regular gluten eaters can have what they want outside of the house. You just have to find what works for you and keeps your child healthy.

[The Horticulturalist]

First Post - Looking for suggestions. My 9 yr old daughter has Celiacs, dx 5/11 with endoscope. 7/11 diagnosed with Hashimoto's disease. Since this summer we've been on a roller coaster. Weird urinary pain/frequency (UTI symptoms - but no UTI), sore - sore muscles, extremely tired, cold, foggy mind,weight gain, irritable, sad, and diarrhea. gluten-free for almost 6 months. Synthroid for 4 months and energy has improved slightly, but other symptoms still exist. The irritability, sore muscles, and foggy mind are the most worrisome. She was a very happy, active young lady and things have changed.

The endocrinologist says her thyroid numbers are fine - must be depression. The gastro says take probiotics - which helps with the diarrhea. He also says there is still trace amounts of gluten in her body.

?'s - 1.) We've been quite diligent with gluten-free diet. Does it take months for it to clear one's system?

2.) Are these common Celiac symptoms - urinary issues, sore muscles, irritability, brain fog.

3.) When should we expect improvement?

Thanks for your advice!

Only other medical diagnosis - low vitamin D, citrus allergy

I would echo what the other have said about checking your pantry for hidden gluten. I have gotten rid of all gluten baking stuff and bake exclusively gluten free now and everyone enjoys it. My husband (a gluten eater) is making a gluten-free pizza for us all as I type, two of us are gluten-free and two are not.

I would seriously consider doing that. Toaster and bread can leave crumbs everywhere even when you've wiped up so think about that and how you store and handle it if you are continuing to have gluten bread in the house. I stopped having gluten pasta as it sticks to everything and I can't be 100% sure it's gone, we all eat the gluten-free stuff now.

Have you replaced your sieves, cutting boards, colanders and wooden spoons?

Do you eat out or at other people's homes? I would consider stopping that for several months to see if that helps, cross contamination might be an issue even when there are gluten free menus.

You need to be 100% sure that there are no cross contamination issues so you can look at other causes. Does she still eat dairy? I might consider stopping that also if you haven't already done so.

I'd also echo the advice about getting the blood tests that have been suggested. And I think your endocrinologist is talking through a hole in their head, I think you need to rule out physical causes before you label a 9 year old as being depressed with no apparent cause.

I am about to embark on the GAPS diet, I am *hoping* it will help me as I also have ongoing GI issues/exhaustion despite being gluten and dairy free for over a year. I have no idea whether it will help your daughter (or me!) but if you run out of other ideas you could take a look at it. The book that you need it called "gut and psychology syndrome", the author is Natasha Campbell Mcbride.

Lastly, not related to any of that, but as your daughter has been biopsy diagnosed in the last year you can ask for the Care Package to be delivered to her from the University of Chicago Celiac Center. We received it last week for my son (he's 7) and he *loved* getting a surprise big box in the mail addressed to him! Here's the link: Open Original Shared Link

They had some helpful literature in there too.