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Cath4k

Frustrated - What Can I Expect From Here? (very Long, Sorry)

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My dd will be 16 yo in less than 2 weeks. Her symptoms have been varied and led her to trying a gluten free diet. She had some immediate relief which convinced her that she doesn't ever want to consume gluten again. Some of her symptoms have drastically improved, some have mildly improved, some have not changed, and some have gotten worse. Here is her list:

Amenorreah - she got one period 2 years ago and never had one after although she has no "reason" not to have been getting it. She is not overly active, she is not underweight, etc. The docs basically tested thyroid and did a wait and see up until this month. A gyn then checked her hormone levels and did an MRI on her pituitary (because she has a misshapen optic nerve). Everything came back normal. The doc also gave her a round of 10 days of Provera (progesterone) to get her to ovulate and start her period. She did start - before she even finished the progesterone, which makes me question whether or not she even needed the progesterone or if she would have started on her own now that she is gluten free. Do any of you have experience in this area (missed or absent periods due to gluten sensitivity)?

Brain fog, fatigue, depression, irritability, headaches, leg pain, joint pain, constipation, diarreah, skin rash (possibly DH) and mouth sores - these all have greatly improved. When she got CCed, these got much worse, but are improving again.

Excessive appetite, numbness in feet, excessive daytime sweating, night sweats, and insomnia - these have pretty much completely disappeared.

Weight gain - despite increased activity and decreased caloric intake (she started tracking it over the summer because it was obvious that she was gaining weight when she shouldn't be), she has gained weight. She cut her calories in half and started running two miles per day, plus played competitive volleyball and still gained weight. Since going gluten free on Sept 25, she has not been running as much (she was sick through detox and then got glutened and sick again and now has new symptoms). She gained a couple lbs, but has been steady now, but still should be losing weight with her caloric intake.

Reflux - we never realized that she had reflux symptoms before going gluten free because she never complained about them. They were mild and she thought they were normal. When she got CCed, reflux hit her hard - severe chest pain, severe back pain, sore throat, stuffy nose, nausea, and coughing. We wouldn't have even recognized it as reflux if both my 2 yo and dh had not been diagnosed with reflux in the last 6 months. We did take her to her pediatrician to rule out anything else (lungs, heart, etc.) The reflux is so bad that she can't run now because everything backs up and she starts coughing and choking on it and can't breathe.

I am tired of doctors and am tired of no one really looking at the "whole picture" of her health. She has been to her ped about this stuff and he ran standard bloodwork and thyroid tests and then said she was probably just depressed. Well, yes, she was depressed, but it was due to her health. She got checked again 6 mths later - same tests, plus an abdominal ultrasound - with no answers and 6 mths later - checked again with no answers. So, we went to a gyn and she ran the tests for hormone levels and ordered the MRI. Everything came back fine, so my dd doesn't see her again for another 6 mths. The doc mentioned PCOS as a possibility but said it was expensive to run all the tests to check for that and it is kind of early to explore it.

Back to the ped. about the reflux symptoms. I gave him the Enterolab results, but he has never heard of Enterolab. He didn't dismiss the results, but wasn't much help either. He ruled out other causes for her chest/back pain and coughing, but didn't suggest we follow up with any treatment either.

Then to the dermatologist about her skin rash. It is looking much better since she went gluten free. Because it currently is on her back (straight down her spine), the doc said it could be DH or it could be acne. She doesn't currently have any of the clear blisters. She scratches them open and then the spots get infected. So the doc wants her to start 30 days of antibiotic and a topical treatment to clear up any acne she has and see how she looks in a month. She is being conservative and didn't want to jump into a biopsy. I am glad for that, but I question the antibiotic with as messed up as her GI system seems to be right now, especially because yesterday her nausea got much worse and she vomited. She was severely nauseated all day and still is today. The nasal stuffiness is worse, so she doesn't know if the nausea is from drainage or stomach acid. Sigh. I will call the dermatologist today and tell her that I don't want to start the antibiotic until her stomach settles and maybe not until she sees the GI. Which leads me to the next doctor...

I made an appt with a GI after the reflux symptoms started. I wasn't going to bother with a GI for just the gluten stuff, because she knows she is sensitive and doesn't want to have to go back on gluten just so a doctor can say she is sensitive. I will take the Enterolab results, but don't necessarily expect him to give them much credence from what I have read here. I am going to try to get her in sooner now that she is vomiting.

SOOOO - if you have managed to read all this - can I expect that she will start to see resolution soon? Did any of you have these type of symptoms clear on their own by just going gluten free? I am happy with the progress she has made. I am also happy that nothing "really bad" is showing up on the tests that they have run. That gives me hope that maybe none of this is irreversible and that she will not need major treatment to try to get her body in proper running order.

Oh, and she tested positive for Antigliadin IgA, Antitissue Transglutaminase IgA, anti-casein IgA, with mild absorption problems. She has one celiac gene and one gluten sensitivity gene. This is from Enterolab.

I have three other dc with their own issues. They have all tested gluten intolerant and two of them are also casein intolerant. They have their own doctor appts. and therapies, etc., so as I said, I am getting a little sick of the traditional medical thing. I won't discuss them in this thread though. My life has been consumed with changing our house over to Gluten-free Casein-free, plus we are chemically free (food has been quite a challenge for the last couple months!) We have replaced everything nonfood, got new cookware, etc. I have spent hours on the internet doing research. While I am finding answers and am so grateful, I am also exhausted by it all.

I just wish I could find ONE doctor who would look at all of this and see the whole picture! Thanks for letting me vent and any advice or encouragement you can provide would be great!

Thanks,

Cathy

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Wow! I really feel for your dd!

From what I can see, she definetly has alot of symptoms of PCOS, plus Celiac. It can take time for the body to "detox" from gluten. And if she has DH, then the skin can get worse before it gets better. Make sure she avoide iodine (including iodized salt), at least in moderation. I do all my baking with non-iodized salt (als called sea salt and kosher salt). But I do have iodized salt in the few processed things I eat, such as popcorn or processed meats.

I have to go help dd w/ homework. I will try to post more later!

ptkds


ptkds

Mom of 4 beautiful girls (the 2 youngest are only 10 months apart!)
Diagnosed with Celiac disease on November 8, 2006; gluten-free as of 12-1-06.

DD#2 13 years old; diagnosed on November 28, 2006. gluten-free as of 12-7-06.
DD#3 9 years old; diagnosed through blood work in October 2006. Gluten-free as of mid-November and doing GREAT!!
DD#4 8 years old; had a scope done on 6-22-07 (at 14 months old) and the dr saw stomach ulcers, but all test results were negative. GI dr told us to put her on the gluten free diet anyway. She is gluten free as of 6-22-07.

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I'd give the diet at least six months, up to a year to allow for healing. If she still has issues that haven't cleared up it will be time to continue digging.

I'm not happy with conventional medicine either. I currently see holistic/natural minded doctors.

What state do you live in? If you're over in my end of the country (Western US) than I might be able to steer you to some good testing/treatment options.

My family (except my husband) testing positive through enterolab for gluten. My husband and I also came back with soy. Dairy wasn't a problem with them (we had been vegan before the test) but did come up on ELISA and ASYRA testing. We all have at least one celiac gene. Hubby has 2 celiac genes so he gladly went gluten free with the rest of us.

PM me if you want to talk about some alternative stuff you can look into at a later time.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Despite her thyroid labs being "normal" a lot of her symptoms are those of hypothyrodism.....do you have her labs handy and what was tested? If it was just the TSH then that is not enough

Of course they could be symptoms of other things as well but the ones she has are the main ones of being hypo


Diagnosed Eczema 1964 aged 16 but with what I know now from research am sure it was Dermatitis Herpetiformis

Diagnosed Irritable Bowel Syndrome 1969 at age 21 but had it from age of 12 many painful episodes over the years( was probably Coeliac all along)

Diagnosed Hashimoto's Disease/Hypothyroid November 1994

Low B12 November 2006

Low B12 (still!) July 2007 Docs are happy with results just above low end of normal..*sigh*....still need to resolve it

Gluten free since October 2006 after failing gluten challenge

Diagnosed Hiatus Hernia and Los Angeles Grade A reflux via endoscopy October 2007

Diagnosed with Coeliac Disease via same endoscopy / biopsy October 2007 (took them long enough!) despite being gluten-free damage still evident although had been taking iron tablets for iron deficiency without realizing they contained gluten. Subsequent blood tests show :Positive Anti-Gliadin IgA EIA antibodies, Positive Endomysial antibodies ,Positive tTG IgA antibodies of 300 ("normal" range 0-15)

Auto-immune disease goes back at least 5 generations in my family (and counting) Mainly Type 1 diabetes and rheumatoid arthritis.

Number 1 Son has Type 1 diabetes ..diagnosed March 2007 at age 31, number 2 son aged 24 is A/I disease free so far ,daughter has lichen planus ( similar to psoriasis) diagnosed 2003 at age 17 am now wondering if it is DH but with flippancy of the young she won't get any testing done

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what is PCOS?


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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I think her presentation is familiar to a lot of us. She will very likely start to have her period soon but if she has not by the time she has been gluten-free for 6 months then they should start looking for other causes. Some of her symptoms in this area do sound a bit like PCOS (polycystic ovary disease) but I would wait for more testing to see if being gluten free straightens everything out.

I agree with you about holding off on the antibiotics for a bit. The rash sounds much like DH and if it is getting better I would hold off on the meds. If it is DH antibiotics will do nothing to make it better and if the pills and the cream by chance are not gluten-free they will get worse not better. If the cream is a hydrocortizone check it with the pharm or the company that makes it to be sure it is gluten-free then if it is it can help the rash to heal a bit faster.

I hope everything continues to improve for her and these issues resolve quickly.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Thanks everyone!

Regarding non-conventional medicine, I do have a recommendation for a local doctor. Unfortunately, my insurance will not cover him so I have to wait a bit before we see him. I am going the conventional circuit right now and then I will have all those tests and evaluations out of the way. Maybe the GI will be a significant help...or maybe he won't. That's the next scheduled visit.

Regarding the thyroid, I do not have copies of the labs. I did see the results from the first time they did it and I think it was only one thing they checked (maybe T4? Not sure if I am remembering correctly.) I don't know how cooperative her pediatrician will be with running more thyroid tests considering it has been done three times already at six month intervals. Should I take her to an endocrinologist?

Regarding the skin issue, I think what the dermatologist is trying to do is clear up any acne she may have and any secondary infection that may exist in the rash so she can see what is left. She wants her to do the antibiotic for 30 days, along with the acne treatment on both her forehead and back. I did a check on the ingredients and they both seem to be gluten free. My dd doesn't want to start the antibiotic at this point even though she is feeling a little better because she doesn't want the GI to try to say her symptoms are from the antibiotic. She doesn't want the issues confused.

I have seen progress, but I just want my dd to feel better! I'm sure y'all can relate, whether it is about yourselves or your loved ones.

Thanks!

Cathy

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Take her to the Endocronologist.

There is at least a 10% corrulation between Celiac and auto-immune thyroid diseases. I.e. Grave's (hyper thyroid) and Hashimoto's thyroiditis. (hypo thyroid ~ Hashi's onset can flip flop the test results hyper to hypo.)

Test's that should be done... (for Hashimoto's diagnoses)

(blood)

~Ultra sensitive TSH (thyroid stimulating hormone)

~T3

~T4

(a full panel screening should be done with these areas being specific for Hashi's)

~Thyroid function/uptake test

this test is done with radioactive iodine, it involves a few trips to the testing office. A specialist will have to read the results, untreated disease has the same reaction as extreme hyper thyroid, because the body has been extremely lacking the iodine.

~ an ultra sound of the thyroid (Hashimoto's will show one side of the (bowtie or butterfly shaped) thyroid to be larger than the other.)

If you have to choose one blood test for checking her thyroid, ultra-sensitive TSH.

(At least that is what my endo, who has managed my Hashi's for the last 12 years, told my to screen my daughter with Celiac during her yearly physicals.)


Michigan

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