• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Vent/feeling Frustrated In General
0

10 posts in this topic

Recommended Posts

Sesara    1

I feel like a bad parent today - we've been technically gluten free for almost 4 weeks, but since I am still occasionally eating gluten until I can get bloodwork (which will hopefully happen on Monday) and he is still comfort nursing 1-2x per day and getting colostrum, I'm sure that he gets a little "glutened" every time he nurses. His sleep has very off this week, so I'm at a loss as to whether it was just the act of nursing, teething, or cross contamination from something else, and while I realistically know that he's getting a tiny amount of gluten through me, I'm sabotaging our efforts at gluten free, I'm also frustrated that his diapers aren't improving.

And sure, it's easy to say "just wean him", but the reality is very different, and being 8 months pregnant, my abilities to get him down for a nap or calm him in a meltdown are greatly limited. I really just want to be fully gluten free with him, but then I also have no idea how long it will take the levels of gluten in my colostrum to go away. Wish I had some idea of the PPM of gluten in a teaspoon of colostrum.

And then I'm frustrated by friends who "don't get it". I don't blame people for not knowing that if he has food prepared on a surface that may be contaminated, like a scratched non-stick skillet or cutting board, it may not be safe to eat. But he's a toddler. They will snatch and eat anything that looks tasty to them, so I cannot for the life of me understand why my friends whom I have talked to extensively about how he will have to be wheat free for his entire life don't seem to think that maybe it's not a good idea to bring cheerios with their own toddlers when they come over for a play date. I'm fine with supplying gluten free snacks, it's just a little infuriating to find cheerios on the floor after a play date. I know I just need to say something, but I don't see why this has to continue to be an issue - if their kid had a peanut allergy, I would be sure not to bring peanut containing snacks around them - I've always asked about peanuts or other potentially allergen containing foods when I'm not sure if parents would be upset bringing them out, so when it's a known issue, I just don't get where other people's brains are on this.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Mizzo    22

I find that if you don't need have an Epi -pen people don't take it seriously. I also think many people just don't care enough to ask questions and learn about it.

The most accommodating and understanding people are parents of other allergens and/or vegan and vegetarians.

A friend of mines husband has meat protein allergies so there house is meat free including gelatin. She has done more Celiac research than many in my family just so she understands my DD. :-)

I don't see how you can prevent the gluten from contaminating your child without stopping eating gluten or nursing, I hope for both your sakes the tests are due very very soon .

Good luck

  • Upvote 1

Share this post


Link to post
Share on other sites
tarnalberry    314

Totally my own opinion and a "what I would do" in this situation: go gluten free yourself and wait until you have finished breastfeeding (even if that's three years from now) to go back and gluten and test yourself. You are not "probably" contaminating your son - you are contaminating him. Amounts don't entirely matter. You don't need to consume gluten for a healthy pregnancy and healthy breastfeeding. I would rather make a conservative assumption for myself and test later when my body is entirely my own again. (I say this as a still-breastfeeding-a-toddler mom myself.)

And yeah, other people just don't get it. They don't make the connection. Eh... we get mom brained sometimes. :) Tell them. Be polite, but firm, "I'm sorry. We are still trying to find all the sources of contamination that are making our little one sick. Please do not bring any food over; I promise I'll have appropriate snacks available." (And, of course, DO have plenty of snacks to share!)

Good luck!

Share this post


Link to post
Share on other sites
Sesara    1

Thank you for the feedback! I am feeling a little more positive now. I actually glutened myself up good today, before I saw your suggestion, but I'm hoping that it's the last time I will do so before Monday, when I will hopefully be able to convince my new doctor to order the celiac panel for me, based on the fact that my son tested positive for DQ2.5. I also managed not to nurse him today, and hopefully I can avoid it tomorrow, since my husband is home for naptime on the weekend and is great about getting him down. And then I can finally start to get all the gluten out of my system.

However, I did have a breakthrough on why sleep has been so rough lately. When we started doing the gluten-free diet, we also cut out anything we thought might be irritating his gut, including ibuprofen which we often give with teething. Another thing we've given it for in the past was growth spurts, but he hasn't had one in so long I'd forgotten about that. Well, he was making me rub his knees and feet a couple nights ago during a middle of the night waking, and I didn't even think about it at the time, since I was half awake, but tonight, my husband pointed out that his 18 month onesies are finally starting to get too short in the torso, and as he was falling asleep tonight, he was making us both rub his foot, knee, and hip joints, and his back - all the places my husband complained about growing pains when he was growing up. So I think maybe he's having his first growth spurt in forever - I'm seriously thinking it's been at least 6 months since we've seen any real growth, and he's only been barely increasing for more than a year - he was wearing these 18 month clothes since spring of 2011.

This makes me feel encouraged that he is probably starting to heal a little, even if I'm causing it to take longer than it should.

Share this post


Link to post
Share on other sites
MitziG    94

you need to be very firm on thhis one. Before playdates, remind the moms that they can not bring snacks. Simply say "timmy is so sensitive that we can not risk him coming into contact with gluten at all, and I know it is difficult for others to know what is safe, so I will have snacks for your kids here." Yes, it feels awkward, but you are going to have to be firm like this for many years to come, so get used to it. To your kid, gluten is poison. You would not hesitate to speak up if they brought actual poisons and left them lying around. Well..that is what they are doing and it is just as serious. It may not make you popular, but your childs safety needs to come first.

Share this post


Link to post
Share on other sites
Ads by Google:


Sesara    1

Well, my Celiac Plus panel is off. So now I can be 100% committed to being gluten free for my son's sake, and possibly my own. So at least that's out of the way.

Share this post


Link to post
Share on other sites


Ads by Google:


Sesara    1

Thanks for the suggestions. Now that I know what's working, I know I just need to speak up louder...which is hard for me, but I will learn.

I feel like we're having a victory today! He has only pooped solid for more than 24 hours, and he has grown probably close to an inch in the last week. And his belly is starting to look less swollen and normal. I think he might have gained weight too! I might even be able to go back to using his cloth diapers, which I now realize stopped fitting properly because of his belly bloat. And I'll have something to show the pediatric GI when we visit on Tuesday for his follow up.

Share this post


Link to post
Share on other sites
melikamaui    30

I tried to post this once before but it disappeared, so my apologies if it posts twice.

Like the other poster mentioned, I have a sign on my front door. It reads:

"Due to concerns for our children with Celiac Disease, we ask that you please

1. Remove your shoes upon entering

2. Wash your hands immediately

3. Do not bring any food containing gluten into the house

Thank you for doing your part to keep them healthy and safe!"

Not only does it serve as a reminder to our friends to leave their goldfish, etc in their car, it also scares away salesmen! :P

Share this post


Link to post
Share on other sites
Sesara    1

I tried to post this once before but it disappeared, so my apologies if it posts twice.

Like the other poster mentioned, I have a sign on my front door. It reads:

"Due to concerns for our children with Celiac Disease, we ask that you please

1. Remove your shoes upon entering

2. Wash your hands immediately

3. Do not bring any food containing gluten into the house

Thank you for doing your part to keep them healthy and safe!"

Not only does it serve as a reminder to our friends to leave their goldfish, etc in their car, it also scares away salesmen! :P

Thanks! I am actually hosting our weekly playgroup again, and I posted a message to everyone asking them to please remember that we are a gluten free household so only bring gluten free snacks, a list of what common cereals were fine, and the offer to provide snacks to anyone else's toddler as needed. I don't mind feeding other people's kids at all, so that option totally works for me.

I have been gluten free with only one slip up where I ate some tortilla chips that may have been CC'd slightly from a fryer, but hopefully, that minute amount won't affect my colostrum too much. We still haven't attained perfectly formed poop yet, but I still feel like we have improved a lot - the "gritty" poop has entirely disappeared, it's just softer than I would prefer.

Tomorrow is his one month follow up with the pediatric GI. I am sure that he is taller, and hoping that he has gained weight in the last 4 weeks, so that I can point that out as a result of going gluten free along with the positive genetic screen. Fingers crossed, our GI will be willing to diagnose. If not, we will be on the 2nd opinion trail for sure.

Share this post


Link to post
Share on other sites


Ads by Google:


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      107,896
    • Total Posts
      938,531
  • Member Statistics

    • Total Members
      65,804
    • Most Online
      3,093

    Newest Member
    Junimoon
    Joined
  • Popular Now

  • Topics

  • Posts

    • Most physicians follow the joint commission’s guidelines on prescribing HTN medications which usually begin with a diuretic and calcium channel blocker (the amlodipine) - see below. Is it possible that your bp was still not controlled on the CCB (amlodipine)? So the ARB was added? Again, I’d just like to say that just bc a drug does have certain adverse effects does not mean you will have them, but I understand if you would not even want to take the chance, given a previous history of celiac disease. http://www.aafp.org/afp/2014/1001/p503.html “In the general nonblack population, including those with diabetes, initial anti-hypertensive treatment should include a thiazide diuretic, calcium channel blocker, angiotensin-converting enzyme (ACE) inhibitor, or angiotensin receptor blocker (ARB). In the general black population, including those with diabetes, initial treatment should include a thiazide diuretic or calcium channel blocker. If the target blood pressure is not reached within one month after initiating therapy, the dosage of the initial medication should be increased or a second medication should be added (thiazide diuretic, calcium channel blocker, ACE inhibitor, or ARB; do not combine an ACE inhibitor with an ARB). Blood pressure should be monitored and the treatment regimen adjusted until the target blood pressure is reached. A third drug should be added if necessary; however, if the target blood pressure cannot be achieved using only the drug classes listed above, antihypertensive drugs from other classes can be used (e.g., beta blockers, aldosterone antagonists). Referral to a physician with expertise in treating hypertension may be necessary for patients who do not reach the target blood pressure using these strategies.” Drugs for BP in different classes work by different mechanisms. It may be worth it to print out those huge, long drug information sheets and go over them with a fine toothed comb. As for CoQ10, have you checked for coupons online? Can your doctor write you an Rx and get your insurance to pay? They might say it’s on OTC and you have to pay out of pocket, but it may be worth it to find a way around that - would a prior authorization do the trick? I don’t know, just bringing up the questions. In the report you cited, these concluding words were to me, chilling:
      “Therefore, we suggest the possibility of a class effect.” Losartan, olmeseartan - doesn’t matter. And I'll say it again, there must be a way to disseminate this information more widely as I had no idea about this adverse effect, and never heard any docs speaking about it either. It really warrants wider sharing. Finally, one person who is often an overlooked resource is your pharmacist. They have just tons of knowledge and should be able to talk to you in some depth if asked, in an articulate, easy to understand way. They may even be able to do some digging and research for you. Plumbago
    • Plumbago et al, Thanks for letting me know  about the "artan" drugs being ARBs. I think Cyclinglady was right the Losartan research is not free and thus not public. I saw the link with no abstract but wanted to read it to confirm as you noted in your ETA that it was another "Artan" drug Losartan causing the problem. I believe it is. I found a great (after more digging) review of all the "artans"/ARBs or most of them about whether they can contribute to sprue symptom's in addition to Benicar. here on wiley as studied by the alimentary pharmacology and therapeutic journal (AP&T) for short. http://onlinelibrary.wiley.com/doi/10.1111/apt.14176/full I wish I knew how to post the able alone it is very informative.  Please scroll over the table to the end of it since it even tells how long to expect before your sprue symptom's/conditions improve IF the "artan" drug is causing your symptom's which I find the most helpful thing about the table.  They also note histological feature (degree of villi blunting) to expect on biopsy. They note Losartan can cause "total atrophy of duodenal villi" by their reporting. I also recently had an issue with my potassium levels so I feel sure it is the Losartan. I remember reading a study about how losartan was better at the "chronic cough" I had developed using Lisinopril so I changed to Losartan a few years ago . . . now I find I could of been making my GI symptom's worse. But to answer  your other question since I began taking Folic Acid a few months ago my BP numbers went down to a healthy level of 120/80 or less sometimes . . . but with medicine. I had already been thinking I wanted to try get off the BP medicine (for good) so this is more motivation. C0q10 worked well but it is too expensive for me to take all the time! I called my doctor to have them put me back on Amlodipine/Norvasc and I can't remember why I changed off that medicine to begin with now.  I do remember needing two medicine's back then to control my BP so maybe we stopped the Norvasc instead of the Linsinopril. But now that they have put me back on Norvasc I hope my potassium levels will correct themselves. I just don't feel safe anymore taking Losartan after learning it could be making my GI symptom's worse or causing the to be unreliable. I first thought my touch of D. was from an antibiotic round but when kefir didn't get me back on track I suspected something else when my Vitamin D levels showed up low too again! Thanks everybody for ya'lls great suggestions and good research on my behalf. I also recommend this verywell article if you are still having GI problems and you suspect an "artan" like ARBs BP medicine and looking for a medicine that might have less severe  or more manageable symptom's for your lifestyle because it comprehensively list's the medicine's by drug types. https://www.verywell.com/hypertension-drugs-1745989 no medicine is without a side effect as (I) am learning but I never thought sprue would be one for my BP medicine and why I prefer Vitamins when I can find out which one too take. Now that I have the Norvasc approved as a replacement for the Losartan I might see if my BP goes up again if I stop my medicine all together as I was hoping the Folic Acid might help me with it (without medicine) and it explains why I was low in Folic Acid to begin with again. posterboy,    
    •   Ironic, We went entirely gluten-free in our home after 2016 for how bad my neurological , joints, mood gets now in addition to my former gi, skin, and other issues . My son shows signs of my early symptoms and voluntarily went off gluten, corn, and milk like me as he did his own food like diary symptom tracking. My daughter continues on gluten outside the home. We warn her of our concern for at times in toddler hood she was constipated and would bloat.  We asked their Dr to test them as I was undergoing my testing and she said no until I had my diagnosis. As we know these things take time and my son went gluten-free . He said after watching mom on my gluten challenge that he will not go back on it .  We await technology further research and we silently watch our soon to be teen girl for we know even if tested negative it can show up one day.  She says I know mom I know. The more Whole Foods here in the home we notice she actually craves gluten / processed foods less and is slowly transitioning as well.  Does your child also naturally eat less gluten and processed as well away from home? I wonder if the taste buds / craving change as the parents diet changes food options.  Thoughts?
    • Funny though, my brother and I were just discussing this. He has celiac and both his son and him are gene positive. Both were TTG/EMA negative but never tested for DGP. My brother had damage on endoscopy. They have not scoped his son. He feels his son is symptomatic but not his daughter.  I have conflicting positive and negative DGP, recent damage on biopsy and negative TTG/EMA. Two years ago my son had negative TTG and DGP. No EMA. I plan to have him gene tested and full antibodies screened again.  My brother has opted to have his children follow a gluten-free diet. I am currently allowing my son a normal diet.  But my own chaos with diagnosis, and my brother's too because he was TTG negative, makes me ultra sensitive to the possibility.  My son's ped doc has a  daughter who was recently diagnosed with celiac.  it was in the family so her mom, my son's doctor, suspected it as soon as she started getting digestive issues and losing weight.  she pretty much told me that she was glad that they didn't put her on a gluten-free diet as a child so she can enjoy eating the things she wanted to Throughout her life.  I have to say I agree to a large extent. There are many diseases that we could get At anytime. we cannot change our lives for that reason alone.  However that being said, my family has both thyroid disease and multiple sclerosis as well.   I know all too well the naive statements and assumptions that doctors can make in the face of science still working to find conclusions.  There are other types of TTG the doctors don't typically test for.  I am well aware of this, and sensitive to it. As a parent, I'm going to allow my son to continue on a normal diet for now, but we are going to pursue testinG  And I'm going to watch it very closely.  
    • It might generate based on traffic searches  or posts etc. My guess. I read them and respond because I wasn't on here as a member in 2012. I only use to visit then. So it's new to me V. happy friday   😋  
  • Upcoming Events