Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Newbie Who Feels Lost


Flyers-Girl

Recommended Posts

Flyers-Girl Newbie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GottaSki Mentor

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 :)

nvsmom Community Regular

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.

GottaSki Mentor

I agree with Nicole.

 

Hang in there :)

Flyers-Girl Newbie

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...

NoGlutenCooties Contributor

. 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!

Fritz-in-pa Newbie

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Flyers-Girl Newbie

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.

NoGlutenCooties Contributor

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.

frieze Community Regular

ncbi.nih.gov/pubmed/19674017

ever been checked for this?

GFinDC Veteran

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

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

C-Girl Contributor

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 Open Original Shared Link 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!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    2. - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

    3. - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    4. - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

    5. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748

    Peta Dunn
    Newest Member
    Peta Dunn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.