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me-myself-and-i Newbie
me-myself-and-i
Posted

Good afternoon! I have been a creeper on this site since June, and just had to join.  I'll hopefully keep this post shorter, but also introduce myself and give some of my background.

 

I am a stay at home mom with two children, run a small daycare in my home and also have a part time job as a bookkeeper.  I live in Canada, and have a mini zoo in my home.  As a child I always wanted to 'save' every animal I found, and now that Im the grown up I get too... and major bonus is my husband supports it :)

 

What brought me here?

I had my first born, and from the moment he was born both of us were going through medical issues. I knew the second he was placed on my chest that there was something wrong.  But it was chalked up to be being a young parent and hormonal. At the age of 5 months my son had already been in the hospital 3 times, and we found out that he was anaphylactic to dairy (I supplemented with formula). This is were my journey with learning everything there was to know about food began. My son has major food allergies, but as he has gotten older he has been reintroduced to many foods that he can now have.  At his worse, he had to be a vegan who was also allergic to a handful of fruits a couple of veggies and nuts.  It was a crazy time, and felt like the biggest elimination diet ever (this lasted for 18 mths) He is able to eat almost everything now, except he is anaphylactic to dairy (all derivatives), peanuts and tree nuts, and all types of seafood.  He's 9 yrs old now

 

Now about me, since I had my first born I started feeling ill all the time. I had to run to the bathroom, what felt like every time I ate. I started suffering from horrible migraines, and restless nights. I felt tired all the time.  I had gone to the doctor many times about my issues, brought it up at every physical.  I had gone for blood work, and everything came back normal.  After 4 yrs of my complaining they set me up an appt for a colonoscopy.  I couldnt make that appt due to the fact I found out I was pregnant with my second child.  I prayed that my issues would correct themselves with this pregnancy.  They did not.  They got worse.  I had to start seeing a neurologist for my migraines, as I was getting them in clusters.  My stomach issues got worse, so I was set for a full panel of allergy tests.  Everything came normal except a few things. I was in horrible pain all the time, and never had energy to do anything. I started having joint issue's, and got sent for xrays to see if I had arthritis. I also got sent to a dermatologist because I starting suffering from psoriasis. My goodness, I felt broken.  Then in the beginning of this year I had had enough!  I chose to do a total elimination diet for myself.  I started feeling better after a few months, my skin started clearing up and my migraines even got better.  After a doctors appt I had in May, I told her what I had been doing.  She sent me for more blood work (first time that she had check for gluten screen).  I got a call the next week from a GI doctor asking me to come in.  I met with him at the end of May, and give my medical history he was very surprised that I hadn't been referred to him years ago.  He told me to go back to eating what I was when I was ill, and that I'd have an endoscopy done. 

Boy oh boy, I did not realize what I was getting myself into.  My endoscopy was booked for Aug 29, so needless to say I had the worse summer ever.  I was so sick, all the time.  I had to go for more blood work 2 weeks before the test and it came back with low B12.  I had the biopsy done and he suggested right after the procedure I go on a gluten free diet asap. I was told that I would get a call once the test results came back.  (during the summer months I started really looking into things, and that is how I found this site)

I had my appt with the GI doctor two weeks ago and got the diagnose of celiac disease.  He said that he was pretty shocked to see the amount of bluntness to the villi considering I was gluten free for some time before we had even met.  So, I am gluten free 100%.  Ive changed hair and makeup products and have already started seeing a change in my skin. 

It's been a long road, and I'm sure it'll still be a bit longer as I'm gonna need time to heal.  Both my children have been requested to go for blood work to check them, and their B12 levels by their paediatrician. I'll be bringing them next week.  The doctor is a tad worried about my daughter, she's almost 4, as since she was 7 mths old she has had constipation issue's, and has already gone for a barium enema. My son has been screened before, but the doctor would like to do it again. Do to his medical history, and he is also anaemic.

So... ya... that was my "short" post on introducing myself.

Thank for reading!!

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eers03 Explorer
eers03
Posted

Welcome to the board!  Sounds like quite a road you have traveled.  This has been a real helpful place for me and wrote my thank you earlier this month, actually.  Way to take control of your health!

1desperateladysaved Proficient
1desperateladysaved
Posted

I am thankful for your definitive results.  I hope the same for your children

 

You have an incredible story and I hope one day you will produce a happy ending for it.

 

D

GF Lover Rising Star
GF Lover
Posted

Welcome,  I'm so glad you decided to share your story.  Like so many of us here, it has been a long hard road.  Now you, and  soon your family, can start some real healing and feel some control about your health.  I'm so happy for you :D

 

Colleen

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    1. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      how much gluten do I need to eat before blood tests?

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      how much gluten do I need to eat before blood tests?

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      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      how much gluten do I need to eat before blood tests?

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for...
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      how much gluten do I need to eat before blood tests?

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      Accuracy of testing concerns

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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