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Newbie Who Feels Lost
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Hi

I recently went thru Invitro Fertilization Treatment (husbands count is low and nothing showing to be wrong with me). I have one frozen embryo left. I live in Canada and Invitro is not covered by health care. So this one embryo is my last chance. So this being said I am writing in here because I'm trying to increase my chances before the transfer of the embryo.

When I was about 17 I was diagnosed with IBS. I remember being around the age of 12 or so and having problems with bowel movements. The stools would be so large that my mom would freak out at me. She made me eat whole wheat bread, reduced cheese, and gave me Metamucil. Those days were the worst I remember having extreme cramps and gas but I can't remember if it resolved the large stool issue.

Since the IBS diagnosis I've just learn to avoid foods that were a huge trigger for me these foods are: dairy, popcorn, egg yolks, oatmeal , whole wheat bread, taco seasoning, and jam.

So most of the time I go days between bowel movements and usual have large and hard stools. Then I get these moments of bad cramps accompanied with loose stools. I just never get a happy in between.

So I am not really sure if I have celiac's, I asked my doctor for the requisition for blood work only later to find out that Ontario Health Insurance Plan doesn't cover this cost and neither will my private insurance. After reading here and there that this blood work isn't overly accurate I'm just not interested and dumping more money in the drain.

So I decided just to go Gluten free a week ago. I have mostly been eating non processed foods and my protein shake that is gluten and lactose free. I really feel like I'm not getting relief with bowel movements, I know I need to give my body a chance. Today there was blood on the toilet paper after a bowel movement. I guess I just need some reassurance.

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Welcome!!

 

Thank you for being so honest about your concerns -- i don't have enough time to respond properly, but will be back.

 

I think others will be along to welcome you and advise before I return.

 

Hang in there :)

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Ontario is hard on celiacs. :( You might have to pay out of pocket to be tested, and I personally think testing is a good idea for most people who suspect celiac disease or non-celiac gluten intolerance (NCGI). Knowing can help with will power as staying gluten-free for life is quite a commitment, plus your offspring will be at risk of developing celiac disease and knowing celiac disease is in the mainly could help save them from some health problems.

If you do look into testing, these are the best tests:

TTG IgA and tTG IgG - most common tests

DGP IgA and DGP IgG - good new test that is great for detecting early celiac disease

EMA IgA - tends to be positive in more advanced cases

Total serum iga - a control test

You need to be eating gluten in the 8-12 weeks before testing so if you think you will go that route, resume eating gluten immediately.

You can order the Biocard home test in Canada for about $100. It is a very basic tTG IgA and serum IgA tester.

There is also the endoscopic biopsy.

If testing is not an option, give the gluten-free diet a good six months before you judge it's effectiveness. Some celiac symptoms improve within days but others take weeks, months, or even years. I can honestly say that I had some symptoms obviously improve at the one year gluten-free mark, and I am still waiting to see if others will improve at the two year mark. Before looking into that last embryo, I would give the gluten-free diet at least six months... More if possible.

Hypothyroidism might be something to check as well. It can mess with fertility and causes constipation too (I am guessing the blood on the toilet paper was from a hemorrhoid - pretty common with C). The tests to look into for that are TSH (should be near a 1), free T3 and free T4 (should be in the 50-75% range of your lab's normal reference range), and TPO Ab.

Best wishes in whatever you decide to do.

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I agree with Nicole.

 

Hang in there :)

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I never thought about the hypothyroidism, would they have caught that when sending me for all the blood work when initially investigating the infertility?

My doctor did give me a requisition for the blood work but at this point can't afford it after the Invitro. She did include a test to check my thyroid on that same requisition. Would going gluten-free affect the results of the thyroid results?

My stool seems to keep getting bigger to the point that I'm clogging the toilet. It's so embarrassing I'm dreading work tomorrow in fear that I will have to go (we only have one plunger and it's usually in the men's washroom. This causes me great anxiety. My cousin suggested I take psyllium husk capsules. I'm afraid to take something like that because as a child I have had bad experiences with Metamucil.

As I type this I have a dull aching pain in what I think is my intestines. Ugh... I thought this would be easy and solve problems not create more...

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. Ugh... I thought this would be easy and solve problems not create more...

 

Hi and Welcome!

 

I agree with the others that getting testing is best but I also understand that sometimes that just isn't a realistic option.  I just wanted to let you know that it is not uncommon for symptoms to get worse before they get better - so if you're determined to try gluten free you need to give it a month or two - sometimes longer for some symptoms to improve.  And you need to be 100% gluten free.  Which means avoiding cross-contamination.

 

FWIW... in my opinion... if your symptoms are actually a bit worse on a gluten free diet (at first) then this is actually an indication that you likely have either Celiac or non-Celiac gluten intolerance.  Why?  Because if gluten was not an issue for you then whether you eat it or not wouldn't make any difference at all.  Try to stick it out for awhile longer and see what happens.

 

Good luck!

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Welcome FlyersGirl,

I am afraid that I will not be much help here,, I am also new and still learning.  But I wanted to say Hi and wish you well with all that you are dealing with!

 

 

 

FWIW... in my opinion... if your symptoms are actually a bit worse on a gluten free diet (at first) then this is actually an indication that you likely have either Celiac or non-Celiac gluten intolerance.  Why?  Because if gluten was not an issue for you then whether you eat it or not wouldn't make any difference at all.  Try to stick it out for awhile longer and see what happens.

 

This^^^ I found interesting, I would  not have thought this way.... Thanks!

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FWIW... in my opinion... if your symptoms are actually a bit worse on a gluten free diet (at first) then this is actually an indication that you likely have either Celiac or non-Celiac gluten intolerance.  Why?  Because if gluten was not an issue for you then whether you eat it or not wouldn't make any difference at all.  Try to stick it out for awhile longer and see what happens.

 

First of all thank you everyone for the input!

NoGlutenCooties that makes so much sense!

Today I couldn't facing going to work so I went to the walk in clinic to see what they could do for me. So they referred me to see a Gastroenterologist, sent me for blood work (not blood work for celiac because I don't have the money for it at the moment), and gave me a prescription for Metamucil. I also stopped at another clinic and made myself an appointment to see a dietician.

I'm praying the Metamucil is okay gluten wise to take, that it does give me relief and doesn't cause havoc on my system like it did when I was a kid.

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I'm praying the Metamucil is okay gluten wise to take, that it does give me relief and doesn't cause havoc on my system like it did when I was a kid.

 

I've been taking Metamucil every day for over 20 years - it works wonders for me.  It is also gluten free.  You may want to ease into it and take a teaspoon per day for a few days and then gradually increase the amount.  It can cause gas and discomfort at first for some people until your system gets used to the fiber.

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ncbi.nih.gov/pubmed/19674017

ever been checked for this?

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Hi Flyer'sgurl,

 

Be sure to drink plenty of water if you take the metamucil. It works better with lots of water.  I'm pretty sure metamucial is just psyilium husks with flavorings added.  So you could just get plain psyilium husks instead.  Another way to take it is to mix it into food you are eating.  It makes a good thickener for soups and gravy etc.  You could also try some magnesium to relieve C.

 

It does take some time for the immune system to stop attacking the gut.  And then the gut can heal.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

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Hi

I recently went thru Invitro Fertilization Treatment (husbands count is low and nothing showing to be wrong with me). I have one frozen embryo left. I live in Canada and Invitro is not covered by health care. So this one embryo is my last chance. So this being said I am writing in here because I'm trying to increase my chances before the transfer of the embryo.

When I was about 17 I was diagnosed with IBS. I remember being around the age of 12 or so and having problems with bowel movements. The stools would be so large that my mom would freak out at me. She made me eat whole wheat bread, reduced cheese, and gave me Metamucil. Those days were the worst I remember having extreme cramps and gas but I can't remember if it resolved the large stool issue.

Since the IBS diagnosis I've just learn to avoid foods that were a huge trigger for me these foods are: dairy, popcorn, egg yolks, oatmeal , whole wheat bread, taco seasoning, and jam.

So most of the time I go days between bowel movements and usual have large and hard stools. Then I get these moments of bad cramps accompanied with loose stools. I just never get a happy in between.

So I am not really sure if I have celiac's, I asked my doctor for the requisition for blood work only later to find out that Ontario Health Insurance Plan doesn't cover this cost and neither will my private insurance. After reading here and there that this blood work isn't overly accurate I'm just not interested and dumping more money in the drain.

So I decided just to go Gluten free a week ago. I have mostly been eating non processed foods and my protein shake that is gluten and lactose free. I really feel like I'm not getting relief with bowel movements, I know I need to give my body a chance. Today there was blood on the toilet paper after a bowel movement. I guess I just need some reassurance.

 

It's a great idea to try and work this out before trying the in vitro again.

 

In the USA, Quest Diagnostics has been running a TV campaign urging people to be tested for celiac before going on a gluten free diet. It's $124 to get it done and the test is 96% accurate.

 

There are Quest labs in Niagara Falls, if you don't have any options closer to home.

 

Good luck!

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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