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mstrain

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mstrain Rookie

I have been gluten-free since the middle of July and as long as I stick to fresh meats, fish, fruits and veggies, I am fine. My very supportive husband bought a bread machine and tons of cook books and we've been trying new recipes each weekend. I am finding that my stomach is upset after consuming food with the new flours; pancakes, pizza, Bette Hagman's featherlight bread. I'm finding the taste OK but I have quite a bit of gas and indigestion after eating them. Does it take time for the body to adjust to these new flours? I'm having a hard time because I am asymptomatic - I actually feel worse eating these items than I did before my diagnosis. Could I be allergic to something else?

This leads me to another question - anybody else out there start out asympomatic? How much time went by before you developed symptoms? I am terrified of the damage I may be doing due to being glutenized without knowing it. I'm pretty sure I am being contaminated by the simple fact that I have a 5, 3 and 1 year old - my 1 year old is always sticking his hands in my face, grabbing my food, etc. My five year old makes her own PB&J and may not be careful, plus we are all new to this celiac-thing! Teaching sharing used to be a big topic in our house, and now I can't share and the kids are having a tough time with this (especially my three year old who doesn't understand "gluten allergy!) :(


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tarnalberry Community Regular

You could certainly be sensitive to other grains. I would try making something simple out of a single grain to try to work through the options. (Pancakes or tortillas work fairly well for this for most flours though taste may not be optimal.) Just make the exact same recipe, the same way, with differing flours, and see how you respond. Alternatively, you can try the grains whole, and rinsed, as it could be a cross-contamination problem in the manufacturing plant, depending on the manufacturer.

Merika Contributor

Some celiacs initially have trouble with ALL grains. If your villi are messed up, you may not digest any of them well, and have just built up a certain tolerance level for wheat, the one you are most accustomed to.

Go with what your belly is telling you and try again in 6-9 months with the exotic flours. You may have better luck then.

I don't mean to be confusing - the other grains don't have gluten and won't cause damage, you'll just not feel very good eating them. I have trouble digesting a lot of the non-gluten grains too.

Merika

WLJOHNSON Newbie

Hi,

I'm glad you're now on a gluten-free diet. I am 60 years old and have been having symptoms (Asthma) since I was 8, but no one knew what was causing it or what to do. Many elimination diets of certain foods finally convinced me that I must be allergic to all grains, all milk and dairy products, egg whites and yeast. This process took 30 years, but finally I was eventually told that I have Celiac Disease, which gave me a name for my illness and got me to this board.

Now I read labels religiously and avoid maltodextrin, casein, and whey in addition to those things I listed above. Even I, after struggling with this for so long, am finding new and better products to eat, especially within the last year. In addition, my new grandson had Celiac also, and I have been able to help him as well. My sister and cousin were recently diagnosed, and I hope to be of some help there too, so everything seems to be falling into place.

I am still amazed that I can walk into a Burger King and ask for a hamburger with no bun, only to learn that the mayo has eggs in it and they lose patience during the process of my orderding something different than that to which they are accustomed. However, I can usually go to Carl's Jr. and get a Six Dollar Burger, no cheese, low carb, and have very little trouble, so there IS HOPE!

I hope your time of grieving your losses will quickly pass, and you will find that you are a pioneer of sorts, leading the way for others just learning that they have Celiac. Estimates are that 1 of every 133 Americans has it.

I just found Van's Wheat Free waffles, Soy Delicious Ice Cream, and Ener-G Wheat Free, Yeast Free Bread. I almost took the bread back, but instead I melted some vanilla soy ice cream, dipped the bread in it and made french toast, something I haven't had for YEARS. I added maple syrup and powdered sugar, and I was in Heaven.

Good luck to you in your quest for good health. Welda Lou

printmaker81 Rookie

I'm wondering if maybe it's not just the grains in the new breads but the other ingredients. Do you use milk and eggs in your breads? Either of these could possibly be making your stomach hurt. I had the same reaction to new breads, gas and cramps. A few weeks ago, I made just an omlet and had the same reaction as I was having to the breads. Now I make my bread using Ener-G's egg replacer which is gluten, soy, and dairy free, and I haven't had any more problems with the breads. Sometimes even if you're not intolerent of dairy, soy and eggs they can upset your stomach while you're still in your healing period.

As far as the kids go, is there anyway you could make their foods gluten free, too? If they're young, they might be more likely to join in on the gluten-free snacks.

nettiebeads Apprentice
This leads me to another question - anybody else out there start out asympomatic?  How much time went by before you developed symptoms?  I am terrified of the damage I may be doing due to being glutenized without knowing it.  I'm pretty sure I am being contaminated by the simple fact that I have a 5, 3 and 1 year old - my 1 year old is always sticking his hands in my face, grabbing my food, etc.  My five year old makes her own PB&J and may not be careful, plus we are all new to this celiac-thing!  Teaching sharing used to be a big topic in our house, and now I can't share and the kids are having a tough time with this (especially my three year old who doesn't understand "gluten allergy!)  :(

<{POST_SNAPBACK}>

I went gluten-free nine years ago, but just recently joined this forum. I'm finding out that I may have been glutenized without knowing it many times. Sometimes I'm darned sure where the contamination came from - I would count back 24 hours from an episode of diarhhea and realize what I ate. Others here seem to get sick right away. Other times I wouldn't have the diarhhea so bad, but would get that crushing fatigue. And still other times I wouldn't get either one of those two, but get extremely irritable for no apparent reason, and would really have to fight that one. One of the "fun" peculiarities of celiac disease I suppose. But since I've been reading other posts and realized that I may have been contaminated, I've been very religous about washing my hands, surface areas, thrown away the wooden spoons, and it has made a difference. I never thought about kids sharing their food, but I do remember that with my daughter, but that was before celiac disease. Can they "share" with a doll or stuffed animal instead of you? Maybe you're not "hungry right now, but Lovey would love to have a piece" would work. Gloves, I can see you doing the housework with latex gloves. Or better yet, have your husband do it! Right. It does get so tiring of having to be on your toes. Oh yeah, we don't have little kids, but sometimes friends and relatives bring theirs. So I have Play-Doh on hand. And just found out from this forum that it is a gluten source. Something my husband did know and I didn't, but who cleaned it up when the guests were gone? Alway something

laurelfla Enthusiast
This leads me to another question - anybody else out there start out asympomatic?  How much time went by before you developed symptoms?  I am terrified of the damage I may be doing due to being glutenized without knowing it. 

<{POST_SNAPBACK}>

if the disease is something you are born with, then i was asymptomatic for about 24 years. i never considered myself as someone who had stomach/digestive problems, or really anything in the way of health problems. in may i woke up one morning and had diarrhea. it continued in the mornings, sometimes every few days and sometimes everyday. i felt pretty awful and couldn't figure out what foods were causing it. about a month later my doctor ordered a celiac blood panel and it came back positive. a few weeks later it was confirmed by biopsy. now that i look and feel so much better, family and friends are telling me that i actually looked pretty bad for a while there. it just seems to have come out of nowhere; no one in my family had ever heard of it, and i think the sheer fact of its sudden "appearance" is one reason i'm having a hard time dealing with it.

i'm also afraid of being accidentally glutened, but not because i live with others who aren't gluten-free, but because of my own ignorance! i'm trying as hard as i can to learn fast.

good luck to you.


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    • trents
      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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    • cristiana
      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
    • EssexMum
      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
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