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dwhite42

Help With Test Results

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Hi all

 

I was wondering if you could help me.  I believe my teenage daughter is Coeliac.  She has a skin condition which the doctor, try as he might cannot rule out that it is Dermatitis Herpeformas.  When I requested a blood test, one of the doctors was very dismissive and said it was a fungal infection despite me listing lots of other issues and also the fact that she had to go dairy and gluten free when she was younger for six months, she also had a blood test then which was negative.  

 

He ordered a test very relucantly and it came back normal.  When I questioned the results with another doctor he was not particularly helpful.  I have since questioned him a number of times on the test but he just changed the subject.  I believe that my daughter has not been given the full set of tests and I was wondering if you could help me in confirming this, so that I am ready and prepared for when I take her back next week.

 

The test which was performed was "Anti-tissue transglutnase lev"  and her level was 4iu/mL

 

on the sheet it states "- Normal

Negative 0-14; positive >14

If present this TTG assay detects both IgA and IgG antibodies.  A negative TTG result does not support a diagnosis of coeliac disease, provided diet includes gluten.  A negative TTG result suggest compliance with a gluten free diet in a known coeliac.

 

Is this test sufficient?  Do I need to request "a full coeliac panel"?

 

Now  my daughter is very tall and is going onto the overweight side, (although she doesn't overeat) she used to be underweight when younger and was sent to a dietician as she was on "failure to thrive" but after I cut gluten and cows milk out she put on weight.  Apparently she "doesn't fit the coeliac description"  but I have been researching and have found that people with DH do not necessarily have as many stomach complaints and she is suffering with really bad muscle cramps, tingling in hands and feet, headaches, has had spasms in her back for years, (she has had two MRI scans and nothing is wrong with it).  The final sympton is what I believe to be DH.  

 

When her bloods were done they also ordered a FBC and because her levels are in normal range he says that he doesn't need to do any further tests.  She also has a vitiligo patch on her arm (which she has had most of  her life) and has just recently started to spread.  I have only just realised that this can be connected to Coeliac or thyroid issues.  My would issues with iron and thryroid show in a FBC or do I need for further testing of vitamin levels etc such as Vitamin D.  There was one number on her bloods which was slightly out but only a little which was her MCH which was 26.9 .  Her FBC was:

 

Haemoglobin estimation                       134 g/L           (115-160)

Total White cell count                            7.2 10*9/L     (4.00-10.50)

Platelet count                                        260 10*9/L     (145-400)

Mean corpuscular volume (MCV)         80.8 fL            (78.0-100)

Haematocrit                                          0.405              (0.36-0.46)

Red blood cell (RBC)                            5.01 10*12/L    (4.10-5.10)

!mean corpusc haemoglobin (MCH)    26.9 pg             (27.0-35.0)

mean corpus. Hb. conc. (MCHC)        332 g/L              (310-360)

Neutrophil count                                 4.64                    (1.80-7.70)

Lymphocyte count                               1.84                 (1.30-5.50)

monocyte count                                  0.48                  (0.20-0.80)

Eosinophil count                                0.21                   (0.02-0.40)

Basophil count                                    0.03                   (0.00-0.20)

 

Any comments would be much appreciated.  We left the doctors with him saying she needed to do a two week gluten free challenge to notice any effects.  Within 24 hours she had gone from 4-6 toilet stops a day to 2.  However she had severe stomach cramp on gluten free.  Could this be because her gut is not used to working efficiently?  Any suggestions would greatly help as I just feel deep down there is something going on particularly with the cramps and spasms really impacting at the moment even when she just gets up out of a chair.  

 

Thanks 

 

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She needs a full & complete celiac blood panel. It is:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA
GLIADIN IgG
GLIADIN IgA
Total Serum IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG

 

AND if she has dh then be aware that 60% of celiacs with dh test negative on the blood panel.

 

I can't believe the doc is giving you such grief on this. She had failure to thrive when she was small & when you cut gluten & milk she gained weight. Now her symptoms are & I quote, "really bad muscle cramps, tingling in hands and feet, headaches, has had spasms in her back for years, (she has had two MRI scans and nothing is wrong with it)." Soooooooooooo telling!!!!!!! I could be reading about myself in that quote.

 

Find a new doc. If the skin thing is a fungal infection then he can TEST for that & state unequivocally it's fungal infection! It's easy enough to do but the doc seems dead set against any possibility of it being dh. So stupid!!! Tell the doc to test for fungus to PROVE it is fungus then darn it!

Get a great dermatologist & have them do a dh biopsy. This is done ADJACENT to a fresh lesion NOT on it. Read in the dh forum for links to things you can print out to take to the derm so they will do it RIGHT.

 

Others will be on to give you more info. on everything else you asked. I'm rushed for time at the moment.

 

MAKE SURE SHE IS EATING A FULL GLUTEN DIET UNTIL ALL TESTS HAVE BEEN DONE OTHERWISE SHE WILL GET FALSE NEGATIVES & THIS APPLIES TO THE DH BIOPSY AS WELL.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Thank you for you reply squrimingitch.  It did actually bring a tear to my eye as I feel deep down that she is but they make you feel so stupid when you go in.  My other child recently had been diagnosed with a rare Arrhythmia condition, whereby the doctors made me feel I was barmy as I knew something was wrong (good old mothers intuition)!  They tried so hard to just medicate her and not investigate until we managed to get to see the right person.

 

 I asked him to take a skin sample for DH and he said there was not enough to test!  Two patches on one hand, bit on her leg and some on elbows and now flaring back up in the same place where she had some previously and you can always see the scaring as it never fully goes away.   He has given her some heavy duty cream, I think in the bid to be proved right but it has not helped. I will try the trick in asking them to test for fungal infection.  He told me the only option would be to be referred to have a biopsy and that it was something that he wouldn't recommend as its not particularly nice.  I did state that I didn't want my daughter to have this but that I didn't want to be sitting in his chair two years later being confirmed that she did have it because she didn't tick the correct boxes.  She also has not started her periods (which he said that she has until she is 15 until they think there would be a problem).  She is only just approaching 14 but she is much bigger than all her friends, height and weight, they have all had their periods since they were 11/12 (as did I).  She has had hormonal fluctuations for some time and I feel that her periods are being suppressed.  I don't want to wait until she is 15 as I feel the damage is also being done.  She's like an old women in a young body.  She has been seeing a lovely osteopath, who has helped her with exercises and help to relieve some tension.  She said some time ago that she thought there was something else underlying. (Apparently really sensitive, unbearably ticklish to being touched) is a sign something isn't right in the system.  

 

She is a fantastic swimmer, this has noticeably become to the point she wants to give up because she is getting too much pain with cramps and spasms and is finding that she has technique but seems to "lack the power/strength to improve".  We left the doctors with him giving her a two week gluten free challenge.  We did one week and then I put her back on it because I felt it was pointless (will not tell him that bit) but I want her to have it in her system as much as possible.  Feel like I am putting poison into her.  Sorry to go on again - but thanks so much! 

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Ditto Squirmingintch.  She knows her stuff, especially when it comes to dh.  Get that full panel done.  Keep in mind that those with dh have a higher likelihood of getting false negative test results so negative tests don't always mean negative.

 

When testing is done, I would suggest she goes on the gluten-free diet for 6 months.  Keep a symptoms and food journal for her to make it easier to assess how it is affecting her.  Symptoms of celiac disease, like ataxia (lack of coordination and weakness), neuropathies (numbness or tingling), and dh can take many months to improve, although some symptoms like stomachaches and bloating after eating usually start to improve in the first month.  If she is doing better, then you know she had seronegative  celiac disease or non-celiac gluten sensitivity (NCGS).

 

I suspected celiac disease or NCGS in my two of my children.  I had them tested but they only ran the tTG IgA, which was negative.  I know that the false negative rate can be as high as 25% for the test, especially in children, and since the doctor refused me anymore tests, I followed my instincts and made them gluten-free.  My youngest who used to have bm's 6 times a day, had his bm's normalize, and my oldest's moods and thinking improved.  I can't prove they have celiac disease but we are living that way and it helps them.

 

BTW, I was tall celiac child too.  100th percentile.  I stopped growing early though, at age 12, when I was 5'8" and 135 lbs.  I also had constipations, joint pains, stomach aches, and the beginning of headaches.  I was finally diagnosed over 25 later... I wasn't the typical celiac child either.   Hang in there and go your instincts.

 

Don't go gluten-free until you are satisfied that testing is done.  Good luck!


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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Tell me how the "rash" we will call it acts. Itchy? When? Stings or burns? After it heals does it leave purplish marks or white marks? Is it bilateral - echoing on the other side of the body? Detailed answers please. How long has it been going on?

BTW, I have an MRI of my entire spine - there wasn't that much wrong with it to be causing me such intense pain but you know back issues..... they can't tell how much pain anything in the back is causing so he ordered epidurals for me which I got about every 6 months. It's just mega steroid shot into your spine which essentially ends up being pretty systemic so I got relief from the pain & inflammation that was happening all over my body. Oh yes, muscle spasms ~~~ I had those too - thought it was just getting older - BAH! I can't recall the last time I had a muscle spasm. Oh & my lower eyelid twitched for years until I thought it would drive me right out of my mind! Huh, all cleared up with gluten free. It sounds like your daughter is starting to get muscle wasting - it comes on slowly. Before it was over I had vertical wrinkles in my upper arms & it seemed like every single thing I did gave me an "injury".

 

When one goes gluten free it can be a roller coaster for the first 6 months to a year - sometimes longer. The body is going through a big upheaval so it can act all wonky - one day great & the next day sucko or 1 week great & 3 days whacked out. it's just part of it. And everyone is an individual of course so there isn't a set hard line of reactions or healing times. 

 

Don't worry about "going on" -- it's what we're here for & you may not realize it but you're giving clues every time as to her symptoms/condition. 

 

You say she had to go gluten-free when she was young & had a negative blood test then. Was the blood taken before or after she was eating gluten-free? And how old was she then? And do you know if that was the full celiac blood panel?

 

Do you know that celiac can "go into remission" & then present again years later? Especially with kids. This is why years & years ago they thought it was ONLY a childhood disease & told people their child could not eat gluten for 10 years & then the kid could go back to it as they would have "out grown" it. Sigh. 

 

I didn't see anything in her recent bloods that checks her iron and they need to do that but it's not just the usual test -- they need to do in depth iron. Some of our members are far better versed on that & other bloods than I am & can tell you exactly what things need to be tested & what the proper tests are. 

 

Yes, I DO know how the docs can make you feel like an idiot! Make you feel like you should crawl under the table & hide your face. Well in this case you have an excuse (so to speak) - you are a MOM advocating for your child's health. Be a tigress! 

 

Really, go over to the dh forum & read as many threads as you can before your eyes blur in fatigue - follow the links contained in them & print out pertinent information to take with you to the docs & derms. Take  a highlighter & highlight specific things you don't want them to miss.

 

I am so glad you pursued your other daughter's condition & were able to find out what it was. Yes! A mother's intuition is not to be dismissed!!! Mothers have special powers. 

 

Others will I'm sure address the issue with her period or lack thereof. I don't have any kids so am not the most knowledgeable person on that score & I would rather those with experience address that with you. 

 

One of our members - cyclinglady - would have been missed on her blood test if her doc had not been savvy & given her the full panel AND she only turned up weak positive on 1 of them but when she had her endoscopy it revealed major damage to her gut/villi. She really didn't have any symptoms either except suddenly her bones kept breaking. This goes to demonstrate there is good reason for the FULL blood panel. Her celiac could have so easily been missed.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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OOPS! Cross posted with nvsmom.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Thank you both for your replies, I am really touched by all the help.  

 

The skin starts to itch before the "rash" appears.  She experiences an intense itch and can't stop scratching and she said if it gets to cold or hot it feels like its burning and stings.  The rash is pretty much bilateral.  She has had flare ups quite a bit through the last year but as I was pretty much caught up in middle child heart issues, I just didn't give it a thought.  From Christmas she was putting on some steroid cream most days and it helped take the itch but all of a sudden there was a big flare up which wouldn't shift, this is when I took her to the doctors (just before Easter) as we were going on holiday and it was pretty bad.  (At this point it had not crossed my mind) and he thought it was probably ringworm because they were very circular.  We then came back after holiday and it was still there.  It then came a bolt from the blue and probably googling of some sorts and the brain wave hit!  It was as if all the puzzle pieces were put into place.  The rash was very bad again and we couldn't see the first doctor and was given a locum.  I requested the test, he even wrote on the blood sheet mum ? coeliac.  Which I thought said it all.  Test was negative and I questioned it and asked whether it was  "borderline" and got the shirty response saying it was "normal" and "normal is normal" and she had "a good antibody response".  Was also told that no further iron tests needed to be ordered because her FBC was acceptable and "normal" and something would show in them should she be low on iron or if there were issues.  

 

So the rash has really been lingering since before Christmas.  It leaves purplish marks which always seem to remain.  They are on both elbows, had some on the top of her legs which seems to have gone but it still itches.  The main areas are top of hands, near her wrists on both sides, circular and moving outwards.  Not great big patches but angry!  She also has some other small patches which are travelling up her arms, again on both sides, circular and leave the purplish scaring.  The blistering seems to come up so quick and quickly goes, think due to scratching but it is very weepy.  Sometimes both sides are up at the same time and other times one side is up, calms and then the other side comes back.  Its just like fighting a fire but you never fully put it out.  

 

She had a blood test when she was 3.5 and I am unsure whether it was a full coeliac panel then.  (I also trusted the doctors more back then and there didn't seem to be so much information!)  I paid for her to have a York Test done (some doctors like, others don't), this came up with gluten, wheat, yeast in the red area and cows milk as not too bad.  I put her on the gluten and cows milk diet as there was no support and she was having hives over her body, screaming after eating.  She was always a miserable child, breastfed and colic as a baby.  So emotional (not much has changed there!)  They never recorded that she went gluten free and were very reluctant to do so.  I do feel that her stomach healed and that she was perhaps lactose intolerant and that the six months healed her.  It is very interesting to say that they can go into remission.  It makes sense.  When she was around 8 years she was then complaining of feeling sick lots but we had moved (father was in the armed forces) and just put it down to lots of emotional stress and she wasn't keen on her school.  She had a blood test, again not sure what (just a general one) but around this time was when she started to have issues with her back (she also slid down a fireman pole and it just went funny but it wasn't a hard landing).  This is why it was checked with an MRI because the spasms were happening when she was standing from the sofa.  The doctor put it down to "hormones and growing"  oh how many times I have heard this.  The spams have been getting worse as the years go on which is why I requested another MRI, it was not granted but we managed to get it done through my husbands insurance with work.  Again nothing wrong, hormones and growing.    She cannot carry moderate shopping bags in weight as her body cannot cope.  She used to be very flexible when she was younger (we all seem to be in this family) but the last few years she can only bend to her knees.  The ostopath said her calf muscles are all just too tight and all of her legs. She can't run properly and looks a funny sight (which in the past we have laughed about with her) but I think they are so cramped she restricts movement.  It just used to be back pain but this last year the spams have been spreading.  Her joints ache, her knees ache, she also has ostoslaters diesase in one knee.  She is now having problems with her ankle mainly on one side.  Pain and goes numb, pins and needles and it has started to "give way" slightly and she seems to keep twisting it!  Headaches are most days but not long ones, they are like spams also can just be a quick shooting pain but others last longer.  Now I am thinking these things I am shocked I haven't put something together sooner but with her age and what I was keep being told "hormones.  Thanks

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Darn sure has all the earmarks of dh!!!! And the rest of the symptoms fall in line with celiac too. 

 

Okay, some good news.

a) Those purple marks will completely go away in time -- there will be no permanent scarring. It might take 6 or 8 or 9 months but I've been there, done that & they do eventually go away.

b(ee) She's young! The damage to her body should all heal after going gluten free (in time) and most likely she will have no permanent damage from these years of gluten. The young heal so in so many ways whereas us older people don't always. 

 

The emotional part may get tons better. That would be something to look forward to right Mum? Celiac affects every single cell in the body & the emotions get affected as the hormones & brain is affected. Malabsorption eventually ends up like malnutrition b/c one isn't getting the benefit of the nutrients they actually eat so they are essentially malnourished. Depression is a big symptom of celiac disease but there is also anger --- I had both --- all gone now. Your daughter is still going to be a teen but maybe just a "normal" teen with normal teen emotions rather than celiac induced emotions. 

 

Before I forget ~~~ if she tests positive then you, her father, all siblings need to be tested every few years. It is a hereditary disease. Let's say you turned up to be celiac too -- then your mum & dad & siblings would need to follow the same every few years testing routine.

 

Note that if she's been on oral steroids or had a steroid shot within 2 months of testing (blood or dh biopsy) it can throw a false negative. If getting a dh biopsy don't let her use any steroid creams for a month (2 months is better) prior.

 

For now, you may be able to do something to help her get some measure of relief from the rash. I'm going to guess that 75 - 90 % of us with dh have found that iodine intake is like throwing gas on a fire as far as the rash is concerned. Limit her iodine intake & see what happens. For a low iodine diet see:

http://www.thyca.org/pap-fol/lowiodinediet/

We need our iodine so don't permanently limit it but give it a good 2 weeks. If you get a derm appt. then you can load her up on high iodine foods beginning a week prior. The iodine thing is medically documented to make the rash flare.

Another thing is NSAID's. Most of us have problems with those making the rash flare. Tylenol seems to be the least offender if she has to take anything at all.

 

Just so you know; the rash can flare & subside any old time it wants to whether gluten-free or gluten eating. Yes, dh is a b%$@#!!!! I always tell people it's just as much a mental fight as it is a physical one because it will have you constantly second guessing yourself & every single thing you put in your mouth. 

 

Here's a link to something you should read & print out & take the the stupid doc & shove it in his face in a nice way of course. Ha-ha

http://www.cureceliacdisease.org/archives/faq/why-is-it-difficult-to-find-a-doctor-who-knows-about-celiac-disease

 

We have a bad lightning storm just about on top of us now so I have to stop here & shut down & unplug the computer. Will return later.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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We have a bad lightning storm just about on top of us now so I have to stop here & shut down & unplug the computer. Will return later.

 

Wow! I think you said it all already.  ;)  Awesome response. What would we do without you around here???

 

Ditto again...what she said!


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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Aw Nicole. now I'm embarrassed. You give me too much credit. 

 

dwhite42, check this out:

Atypical presentation
An increasing number of patients are being diagnosed without typical GI manifestations at older ages. A reasonable assumption is that approximately 70% of patients with newly diagnosed celiac disease do not present with the typical major GI symptoms. Once again, a relationship between the age of onset and the type of presentation is noted; in infants and toddlers, GI symptoms and failure to thrive predominate, whereas, during childhood, minor GI symptoms, inadequate rate of weight and height gain, and delayed puberty tend to be more common. In teenagers and young adults, anemia is the most common form of presentation. In adults and in the elderly, GI symptoms are more prevalent, although they are often minor. 

 

From:

http://emedicine.medscape.com/article/932104-clinical scroll down to where it says Atypical presentation. Print that out & show it to the doc. 

 

Here's a link where you may find some things that help make your daughter a little more comfortable - help lessen the itching:

https://www.celiac.com/forums/topic/96552-help-for-the-itching-stinging-burning-pain-of-dh/


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Thank you all very much for advice and links.  I am going to print off and highlight and I already have a notebook with snippets written down!  My TIGERESS will come out and protection mode on!  I am sure with the mention that we should be able to go private might spurn on a letter to recommend her to a ped gastro consultant (as it did for her second MRI), I have already researched who I would like her to go and see, (nothing like being prepared) and who specialises in coeliac and has a fantastic success rate with procedures.

 

 Very interesting to hear about mood and anger.  I have noticed that the last six months we have seen a different girl but again I put it down to body changes and thinking any day now her period will start. She admits that she just feels so angry lots of the time and everything seems to irritate her.  She has always been rather "sensitive" particularly dramatic with siblings but normally much calmer with myself and reasonable, however that has changed.  She is all over the place at the moment and hopeful that we can get her back to perhaps being just "normal teenage hormones"  as opposed to gluten rage   :)

 

Hope the storm passed and the sun is now shining!  

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Oh and while I am in the flow, I have also read that teeth can be effected.  She is my only child with "bumpy teeth" which go very yellow as staining sticks to her teeth.  She has had this from a very young age.  Also had to have a tooth out when 8.  (Now my middle child would eat sweets and chocolate if allowed until they came out of her ears and loves anything sweet and has never had teeth issues).  Was always asked by our old dentist what her diet was like and did she eat lots of sweets and drink juice!  No she loved her fruit and has the occasional fizzy drink but not daily or even weekly.  She has to have them given a really good clean every six months and avoid anything with colouring in (natural or unnatural), such as coloured ice lollies, coke etc. otherwise it just sticks.  

 

Did bring this up with her new dentist (who is very lovely and seems very good compared to some others we had) but she said she had never heard of coeliac effecting teeth.

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I love this!

 

"Children in a family are like flowers in a bouquet: there's always one determined to face in an opposite direction from the way the arranger desires."

 

 

~Marcelene Cox

How true! As I'm an avid gardener I especially relate. :)

 

Great links Karen! 

dwhite42, I believe we celiacs are also educators in that we know therefore should do what we can to educate professionals about the symptoms of celiac & testing rules etc.... You could print out those items Karen linked & mail of take them to your dentist. I'm sure she wouldn't be offended by the education. Actually on my time here I have run across several people whose dentists were savvy enough to suggest they get tested for celiac disease & were right on b/c those people DID turn up having celiac. 

 

I would also suggest you start researching exactly what derm you want to take her to. Try to find one who has dh biopsy experience but if you can't find one then print this & take it along so they do the biopsy right:

https://www.pathology.med.umich.edu/handbook/details.php?testID=849

also this is so you know how it's done:

http://celiac.org/celiac-disease/dermatitis-herpetiformis/

 

It is my opinion that the quickest way to get a dx of celiac if one has dh is to get a dh biopsy. A dx of dh IS a dx of celiac & no other tests are necessary. :

http://www.cureceliacdisease.org/archives/faq/can-a-skin-rash-be-associated-with-celiac-disease

 

Since we test negative on the blood so often it's most often easier to just go the dh biopsy route. And IMHO based on everything you've related that your daughter DOES have dh. She fits. She fits so well!

Having said that, it won't hurt to have a good gastro & get an endoscopic biopsy (6 samples minimum) & the gastro can order the labs for her vitamins to see if she's deficient in anything.

 

Please let us know as things progress and ask anything at any time. 

 

Oh & I'm sure you've already read it but delayed puberty is associated with celiac disease so it could be the cause for her not getting her period yet.

 

Go get 'em mom! 


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Thank you Squirmingitch, just found your post, didn't realise I had a page 2!  Jut getting used to the layout.  

 

Very interesting Frieze and there are other issues which my middle one has which is really making me question.  She apparently was born with this hair sized area in her heart which the electro pulses jump into and and get stuck on a circuit.  However it sometimes never presents itself and most common is late teens adulthood as its quite unusual for someone age 10.  

 

My middle child is quite unusual in that she she doest usually get ill but when she does she has weird things! She's not a temperature type of girl.  She had shingles when she was seven (very mild) however this again is very unusual and no temperature etc.  She also has mossculum contagious sports over her back.  She has recently had lots of flashing lights and shooting pains in her body.  Very random and doesn't last very long.  She kept moaning and I took her to the doctors very recently, and if the doctors could roll their eye!  She asked if anyone in the family was Coeliac and this is what prompted my search because I said her sister had issues with Gluten and Cows milk when younger, so she run lots of blood tests.  Calcium, protein level, it D3, full blood count , ferritin, renal function tests.

 

I called for results and spoke to a different doctor (who happened to be the one who ordered the incorrect Coeliac test for my eldest) and he told me everything was normal.  I pushed him and asked what there anything which was on the lower side on the vitamins.  He said that they were all in range but if he had to "be really picky" he asked what her diet was like and I said it was good although she is a real sugar craver.  He said that the only thing that he could say was that her Vitamin D was in "normal" range but perhaps she could have a bit more milk etc and that was that.

 

I went back to the doctors recently and requested a copy of her tests and was really annoyed.  The range for Vitamin D was 50-140.00  She is 52 AND it says on her results - "ok but consider diet review or supplements"  I couldn't believe it.  He never would have even said anything me had I not questioned and he certainly didn't tell me that was written on her results.  it also said that "Vitamin D level may be inadequate in some people at 30-50"

 

Now about 2 years ago she was on a high does of fish oils (recommended by a dyslexia doctor - as she is dyslexic and has slower processing and they have researched that many dyslexic people are quite often lower in Vit D).  

 

 

Does anyone know how long it takes for your levels to drop or increase?  

 

We have a lovely osteopath, who has done some work on both my daughters and my middle one she she is (rather congested) as when she gets run down she gets blocked oil ducts on her eyelids and we have to use hot compresses to burst them.  She also suffers with constipation and had to have some medication when she was younger, she was never like her sister, she was very content and a very good weight.  

 

Could she perhaps have the "gene" and it lay dormant for some time?  Do you think it can be lurking around and then switch on?  

 

Once I have my eldest sorted, it will then hopefully give me some ammunition for further investigation on my other children!

 

Sorry for my weird and wonderful questions!

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There is such a thing as silent celiac disease where the person has ZERO symptoms. We have several members who are silent celiacs. 

Here is a link to a symptoms list:

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf

so you see it can be quite varied.

I find it very interesting that the lady doc asked if anyone in the family had celiac when you were there with your middle girl. I wish you could get back in to that lady doc! 

 

You know, it doesn't have to be a gastro or a primary care who orders the celiac blood panel. If that lovely osteopath is willing she could order the panel.

 

Celiac disease can present at ANY time in a persons life. This is why if there is a dx'd family member then ALL first degree relatives should be tested every 2 or 3 years even if they aren't exhibiting symptoms.

 

I don't know how long it takes for Vit D levels to move one way or the other. I'm going to guess it is largely dependent on the individual but I'm just guessing mind you. Maybe someone else has more knowledge in that arena & will answer.

 

I quote you here:

"Could she perhaps have the "gene" and it lay dormant for some time?  Do you think it can be lurking around and then switch on?"

Again, YES! At some point celiac disease gets "triggered" & presents. What are the most common triggers? When I first came on this site I was told, great emotional stress, surgery, an illness, pregnancy or childbirth; the latter 3 being physical stressors. I used to have some great bookmarks referring to that but my computer bailed on me & the files were so corrupt that I lost most of my info. even though I had backed it up. If you back up corrupt files then the back up doesn't do you any good.

Anyway, I did a quick Google & found these articles which enumerate some triggers & research being done on solving the question of what triggers it.

http://theceliacmd.com/2014/09/triggers-celiac-disease-one-possible-answer/

http://www.cureceliacdisease.org/wp-content/uploads/2014/07/CdC_Newsletter_0614.pdf

http://celiacdisease.about.com/od/whatisceliacdisease/a/What-Causes-Celiac-Disease.htm


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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I would guess that about half of our members developed celiac disease in their adulthood, and the other half developed it when they were young.  It really can hit at any time.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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Celiacs are enigmas, we are like snowflakes, no two alike.  My daughter and I are both celiac, both have had issues since birth but just diagnosed a little over a year ago, but our symptoms didn't get worse until I separated from my husband 4 years ago, a very stressful time.  My son has had the same issues as my daughter and a few more on top of them, vitiligo and he has had "cradle crap" on his head since birth that no matter what we tried, it didn't go away until he went gluten free last summer and then when he went back to school and was eating gluten again, it came back.  He has been tested and is negative on his celiac panel, but I feel that he will eventually test positive.

 

People produce antibodies at different points in their disease and at different levels.  My antibody levels were only 37 while my daughter's were >100, and I was a lot more sick than her.  It's all a person to person thing.


Diagnosed April 7th 2014

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Wow thank you, the more I read the more fascinated I am!  I love the "Celiacs are enigmas" and it does seem they are like snowflakes.  I cannot believe in all that I have read that we are still seeing such reluctance from medical professionals.  I have been talking to my sister about this as the more and more I find out, I am convinced she is celiac.  Especially after all the information you told me about your back Squiriming itch.  She has suffered for years since the birth of her first child.  Even to the point of not being able to move and crawling up the stairs on her hands and knees.  She has had tests, MRI and nothing, just think its in your head!  She suffers badly with pins and needles, cold, stomach issues and has had a variety of blood tests, none of them for celiac.  

 

Gave her a good talking too this weekend and told her she must go to the doctors to check, I think to shut me up as she probably thinks I am going a bit bonkers with my research, she tried the "biocard celiac home test" which is recommended by a doctor who is a celiac and who appears on TV over here in the UK.  She performed the test last night and it came up with a positive line!  I cannot believe it.  I think she's in a bit of denial but have told her to go and see the GP sharpish and get tested to have it fully confirmed.  Her young daughter has also had issues with tummy pain and this has been increasingly bad over the past couple of years, so have told her to now get her skates on and get cracking!  So thank you Squirming Itch for telling me about your back. I cannot believe how many people struggle for years and it NEVER crosses any Consultants mind when they find nothing.  

 

I am not going to see if I can find a good dermatologist  here in the UK, so I am prepared, I will have a massive booklet at this rate when I go to the doctors!  

 

Thanks again 

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Make sure to give sister a copy of the FULL CURRENT CELIAC blood panel so she can make sure the doc does ALL the bloods in it. She sounds like a celiac candidate for sure.

Oh yeh, the doc jumped up & down with joy wanting to prescribe me anti-depressants. Seriously, he actually jumped up & down giggling like a school boy - I could have slapped him! Jerk! If they weren't doing that, they were blaming everything on menopause. Menopause is easy compared to celiac & menopause ain't easy. 

I didn't have much "D" - just once every 6 or 8 weeks with bad cramping - thought it was what I ate or just what everyone has "once in a while" -- I was SO wrong! Had bad, bad, bad bloating like I was just plain going to pop - like I was 15 months pregnant & the PAIN from it! OY! Belched like a sailor, gas, migraines for years & years & years (can't tell you the last time I had one now) so bad I gave myself shots of Imitrex. 

Got my age 50 colonoscopy & when gastro heard me say bad bloat his ears perked up but when I said I didn't have constant "D" then he blamed bloat on menopause. 

I'm not quite 5'2" & I went down to 93 lbs. with the scale occasionally reading 91 lbs. Now I'm up to 110 lbs. Never weighed more than 103 lbs. in my life before now. I have healed YAY! Now if I can keep from getting fat LOL!


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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I will make sure she is well and truly armed and will be expect a full print out report from her when her tests are completed!

 

Its all very strange and not that I am trying to pin it on all of my family members but I have suffered very badly with migraines since I was pregnant with my son who is now 7.  Doctors have not been particularly helpful and the latest medication I now can't take because my blood pressure is on the higher end.  (I exercise and am not overweight) was slightly about a 1.5 years ago as I just couldn't get the energy as I was so wiped out.  I have to now limit the amount of late nights etc to help combat them.  I have hit a point in my life where I can't go on with them any more and started looking into food etc, and have found that gluten and dairy are major contributors to inflammation in the body. I also have suffered with bouts of joint pain in my legs and just feeling under par.  I have now been gluten free for 3 weeks today and I had one minor migraine at the beginning.  Only sick once and was able to get moving at lunchtime and watch my daughters ballet show.  Normally I am in a dark room until night time and sometimes wake the next day with it again.  I have also been one week dairy free. My blood pressure however has still not gone done as I would of hoped. :(   

 

I just had some blood tests as I am  41 and things seem to be going haywire.  I had my ferrin tested, B12, Iron and a TSH, and glucose level.  Everything was normal.  Now that it pretty much looks like my sister has it, (my mum also has very similar issues and has done for years) and I am convinced my daughter is, I am wondering if I should go back on the gluten and get tested myself or just to hell with it and stay gluten free.

 

My daughters appointment is on Thursday and she went gluten free for one week only (doctor asked us to do 2 but after a week I decided it was pointless and would just mean more delays) On Thursday she would  have been back on it for two weeks, as I am going to push for a full Celiac Panel to be done as it wasn't last time.  Would that one week effect her results.  Or should I postpone the test for another few weeks?  I am thinking that will be the end to my questions for a while!  :rolleyes:

 

Many thanks 

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I'm thinking she'll be okay since it was 1 week & she went right back on it & will be for 2 weeks. Others will chime in as to their opinion.

 

I keep thinking of symptoms I had which resolved gluten-free. I had always had as normal as it gets bp but in about 2008ish my bp began to rise for no apparent reason -- I had changed nothing about my life. It wasn't to the point I needed meds yet but the doc was warning me you know. I tried ditching caffeine & it had no effect on the bp. Guess what? I'm back to my old bp numbers. It took  6 mos. to a year (I didn't keep dates on that) but they went down. I also had - & this had nothing to do with bp - this rapid heat beat & very strong that I could hear in my ears -- an accompaniment I lived with every day. No more. Dizzy or ataxia a lot - I could be standing at the sink leaning against the counter & just about fall over - weaving when I walked at times - just feeling off balance - horrid feeling but all gone now. At the end there I was getting nauseous. For years had what I term "terminal indigestion". I had gotten something like dyslexia in that I would type & things would be all screwed up - transposed letters you know. I got really stupid feeling -- couldn't remember names of common things & couldn't carry on a normal conversation b/c I couldn't remember words. Stuff like the word "fork" or table -- I would end up having to almost stutter, "You know, that thing you bring food to your mouth with" to mean fork. Or, " the thing we eat off of" meaning table. I really couldn't compose a sentence coherently. Sounded dumb as a stump. All gone now. 

You most likely are getting cross contaminated right now. Read the Newbie 101 in the coping section:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

The stool test is bunk - it can't tell you if you DO have celiac or DO NOT.

 

If you stay gluten-free & then later want to get tested you will have to do a gluten challenge - 12 weeks of 1-2 slices of bread per day. MOST celiacs have MUCH stronger reactions to gluten once they have been gluten-free some having such strong reactions they can not make it through the gluten challenge. Just food for thought. 


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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