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Hi All,

 

Im new here and I really dont know alot about Celiac apart from what foods I can and cannot eat, I apologize for grammer/spelling mistakes and the way this is probably going to read, my head is spinning! 

 

Around 5 years ago, I kept getting dizzy and IBS systems, the doctors diagnosed me IBS and low Iron (I've been on and off iron tablets for the last 15 years) - no tests was done.

 

3 years ago during pregnancy I kept getting high levels of protein and low platlet levels, was induced early because of this. 10 weeks after the birth of my son I started to swell up - high protein levels in my urine, kidney biopsy showed Minimal Change Diesease - I took Steriods various of strengths, Vit D and antacids for 2 years - I also went from a size 14 to a size 22.

 

1 year ago - low iron levels again. Kidneys are finally stable, dont take steriods/vit d - started to drop weight drastically, belching, constant bloated, stomach cramps, burning in stomach, constipation - Doctors said it was a result of the iron tablets and prescibed antacids

 

4 months ago - Demanded a gluten test - test come back high positive and a referal letter was sent to the stomach department to test for Celiac (sorry my head is so foggy right now I cant remember the right name!) Stopped eating gluten.

 

Now -  Gluetn free for 4 months, first 3 months was a lot better (I still had days of symptoms but no where near as bad) but this last month have been a nightmare and worse than when I was eating gluten -  I've been back to my GP's, havent heard anything from the referal so I've asked my GP to do some test - I have low calcium and Iron, awaiting the test on Vit D, I feel like taking iron again have upset my stomach - havent moved far from a hot water bottle in days so I've had to stop taking them. I feel really anxious, my feet and hands are tingling, my bones are hurting so many aches and pains, tired, dizzy, feeling really low, I've lost so much weight in the last couple of months I am now down to a size 12, I've noticed I get symptoms from soya and milk. I lived in a shared house with gluten eaters so I tend to prepare all my food on my plate and wipe the units down before I prepare food and have a gluten free cupboard 

 

So my questions are: can the vit levels be making me feel like this? Should I continue taking the Iron? Is all the above connected to gluten intolerance? is it enough to just wipe units down and use a plate to prepare food? 

 

Like I said above sorry for the way this is written xx

 

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I am sorry that you are feeling unwell.

I am not sure you had a celiac blood panel which requires you to be eating gluten daily for 8 to 12 weeks or the tests are invalid. Here are the tests:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

Why hasn't you GP referred you for celiac testing? I am not sure you took an industry-standard/recognized test.

You can either get back on gluten for three months, get that referral and get tested or remain gluten free. It might be worth it to get back on gluten and get properly tested so that your kids can get easily tested -- this is a genetic disorder. Depending on your illness it can take 1 to 3 years to heal. You might want to check out our Newbie 101 thread under "Coping" for tips about cross contamination and other hidden sources of gluten if you decide just to stay gluten free.

Oh, yes, low vitamin levels and low iron can make you feel sick. I would keep taking them. If you have celiac disease, intestinal damage causes malabsorption and creates other problems like anemia, osteoporosis, etc. Of course most deficiencies will eventually resolve on a gluten free diet.

Go to the University of Chicago's celiac website. There is a section for professionals that you can print and share with your GP. Read the other sections for yourself. I think you need a better understanding of celiac disease.

Welcome to the forum and let us know how it goes!


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Welcome to the board.  :)

 

You may be asked, unfortunately,to go back on gluten for further testing at the GI's office.  You may want to call the office and find out if they'll want that.  It might be easier to go back on gluten sooner rather than later in your recovery.  Once you are feeling well, it will be tough to make yourself sick.

 

The recovery from celiac disease can be a slow up and down process.  Like you, I felt better at first (and lost about 15lbs - a good thing for me) but then I really slid backwards in some symptoms from months 3 to 6.  My main problem was fatigue, arthritis, sick feeling, and mouth sores.  I was convinced those symptoms must be lupus and not celiac disease because I had already been gluten-free for a few months, and it was quite a bad flare-up.  It eventually went away and the rheumy said it must still be celiac disease (so did the veterans  around here). I found it hard to believe but settled in to wait it all out (knowing celiac disease recovery can take a few years.  I have had some flare-ups since then but they are much less frequent, of shorter duration, and much less severe, so I think everybody was right - it was celiac disease.

 

Part of your symptoms could be that you are still recovering.  It really can take a couple of years to get better.  Nutrient levels usually take at LEAST 6 months before they start to improve.  Keep at it, and retest a couple of times a year.

 

About half of all celiacs can not handle milk when they are diagnosed.  The intestinal villi, which makes the lactase to digest lactose, are damaged still, so milk can cause a lot of stomach issues.  It's a good idea to drop milk for at least 6 months, and possibly for good.  Many regain the ability to eat milk but many do don, or just have the ability to handle things like cheese (which is very low in lactose anyways).

 

Other food sensitivities can be found among celiacs.  They don't cause the autoimmune reaction, but it can make you feel just as lousy as gluten.  Corn, soy, nightshades, eggs, guar or xantham gum, carageenan, or other unexpected foods (for me it is raw apples and pears) can make you feel bad minutes to a couple of days after eating it.  A food and symptoms journal may help you figure out the cause.... Sugar is a bad one too.

 

Celiac can co-occur with other diseases, the most common being diabetes (T1) and Hashimoto's hypothyroidism. I have Hashi's, so I can tell you that it could be the cause of some of your problems like dizziness (from low blood pressure), pain, fatigue, upset stomach, and low mood.  It doesn't usually cause weight loss (unless you've swung hyper) but going gluten-free can do that to those of us who needed to lose a few.  You might want to look into those two problems when you see your doctor.  Thyroid tests to request are TSH (should be near a 1), free T4 and free T3 (should be in the 50-75% range of the lab's normal range), and TPO Ab.

 

To your questions:

Yes low vit levels can make you feel bad, and they will be slow to improve.  Check D, B12, folate, A, K, Mg, Ca, Fe, Zn, Cu, and ferriin.

 

Talk to your doctor about dropping the iron.  If it is making you miserable, and not crucial to survival, you may need to drop it.

 

It could all be connected to gluten intolerance.  It can cause dementia to axatia, to headaches, to arthritis, to a stomach ache.  Celiac has 300+ symptoms. http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf

 

Cleaning your prep surfaces should be enough; you'll need to wash it clean with soap and water.  Remember that you can NOT share a toaster, plastic colander, plastic or grooved wooden cooking utensils, or dented (teflon) pans or pots, butter, spreads, and dips.  Possible glutening causes are pet food, kisses from gluten eaters, shared toothbrush, lotions or hair products with gluten, vitamins or medications.

 

Best wishes.  I hope you get it figured out.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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Welcome to the board. You never need to apologize for 'foggy brain' spelling, grammar etc.... If you can find understanding for that anywhere you will find it here. 

Did anything change a month ago? A new supplement, refill on a generic script, did you add a new gluten free item? You could just be getting more sensitive to CC or a different intolerance may be rearing it's head that was masked a bit by the gluten reaction. I went down hill at about the same point as my soy intolerace became more obvious. For some nightshades like potatoes and peppers can be an issue. 

Be sure to read the Newbie 101 thread at the top of the Coping section it will have some good info for you. Gluten can be really sneaky. 

I hope the doctors can get to the bottom of your problems and that you are feeling much better very soon.


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 all, The general GP have referred me to see the specialist but there is a long waiting list, I've already waited 4 months - I decided to give up gluten after the blood tests as I knew it would be a long wait and I would have done anything to get rid of those symptoms. 

 

I have a little boy who is 3 and he had a food allergy not so long ago as he suffers with asthma/ezcema - but everything come back negative including Gluten.

 

I understand for the biopsy and when I get to see a specialist I might have to eat gluten again but until my appointment with them I cant get to talk to anyone except my GP. 

 

Thanks for all your advise - I'll purchase some new cooking equipment. Would kisses from gluten eaters effect it? Sorry I know my knowledge isnt great, my little one still eats gluten and im always preparing his food and giving him kisses. Nothing have changed eating wise, this last week I have cut out all gluten-free foods and have been only eating fruit, veg and meat to see if that has any effect. Is there any chance my period could be affecting my digestion? It seems to have gotten worse since it started. I think also I am getting really anxious about my symptoms which is making it worst. I'll check out the websites and the sections you have all mentioned.

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Please read the Newbie 101 section because YOU CAN GET GLUTENED BY SWEET BABY MOUTHS!  Same goes for your partner if they consume a beer or eat a sandwich and they kiss you before brushing their teeth.

 

Our house is gluten free.  That is because both my husband and I need to be gluten free.  Our 14 year old is forced to be gluten free inside our house.  She gets gluten fixes in her school lunch (only prepackaged gluten items) and at restaurants ("Honey....how about a burrito before water polo."  No gluten is allowed in my car either.  I just can not worry about gluten.  I need a safe place to let down my guard.

 

She will be tested every two to three years, because odds are she will more than likely develop celiac disease during her lifetime. 

 

I hope this helps!


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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