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Help A Grandmother To Help An Expectant Mom


rsavage

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rsavage Newbie
:unsure: I need help I am a diagnosed celiac. My daughter refuses to have a genetic test. She has a rash, thyroid problems, blood sugar problems, has had bone problems , possibly lack of bone formation, severe morning sickness etc. Many of the symptoms I had before diagnosis, when I was having children. She took a blood test over a year ago and doesn't see it as a snapshot in time. How do I convince her to have a genetic test? I promised to leave her alone after that. If she is genetically inclined, I would have to figure a way to convince her to have the gluten -sensitive stool test. So help me do it, Please>

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Guest jhmom

What kind of blood-work did her docs do and what were the results??

One way to convince her is to let her read some of the post here on this board. If she has a lot of GI symptoms then she should realize that going gluten-free will improve her health 100%! I wish you luck in trying to convince her to take charge of her health and she also needs to realize how dangerous it is if it's left untreated!

Good luck to you

  • 3 months later...
Queen Serenity Newbie

I think your daughter is living in denial. It looks like she has a lot of health issues. How could she just think of herself. She is going to have a baby, who will be affected very much by her health. Her selfishness may harm the child. I'm a mom. I was diagnosed with Celiac's 9 /12 years ago, after the birth of my second son. I was very sickly during the pregnancy, but I was being tested for all kinds of ailments. They did not discover Celiac's until he was 8 months old. But, my point is that I was seeking help for my problems. I also have Hypothyroidism, which was not found until May 2003. This is also associated with people who have Celiac's. I have also recently given birth to my daughter on May 3. I was blessed, because she was born a healthy baby. I can't imagine living with myself, if I had as many health issues as your daughter, and not finding out what was ailing me. It's a sad set of circumstances for you to have to endure. Do as Stacie suggested, have her read these responses. Maybe strangers can knock some sense into her. I wish you luck in your quest. I hope she changes her mind, and gets tested. Keep us posted.

Vicki :)

  • 3 months later...
tammy Community Regular

Good for you, your daughter may still have time to regain her health.

Perhaps telling her that a gene test only points her in the right direction and does her no harm. BTW, I have had all of her symptoms too.

I am a person who believes I had undiagnosed gluten sensitivity since childhood. I was diagnosed with hypothroid at the age of twelve and I am now 39. My symptoms and lack of proper development were the first clues, yet undetected. Now as an adult, my signs and symptoms are endless. One simple blood test, stool test and gene test confirmed my symptoms. December of 2002 I received my answer-gluten sensitive/casein sensitive with no malabsorption but still hypothyroid with another diagnosis, adrenal fatigue!!!! I was 37 year young!!!!!

I needed to do this in my time, the fear and denial were strong. Knowing the future of an undiagnosed problem and the fact that I had a non-invasive choice made the final decision easier. May I strongly suggest that a thyroid test be done on the baby for the benefit of the child.

May the root of the problem be revealed and may the baby get the right care he/she needs and deserves. :D

3boyzmom Newbie

My son has a severe gluten intolerance that caused him to drop from the 80% in weight and height to the 15%. He eventually ended up in the hospital for 12 days from an intestinal crisis, where we stumbled across Celiac disease. All the pieces fit for him.. malabsorption, anemia, lack of growth, bloated belly, headaches, loose stool, lactose intolerance... yet, he was NOT diagnosed with Celiac's disease. His bloodwork showed only elevated IgG and his biopsy came back "inconclusive."

I put him on a gluten-free diet, even though we were advised to put him on a regular diet, and lo and behold he thrived. ALL the symptoms that he had before, disappeared. He grew 4" in 6 months and gained 7 pounds. When he accidentally eats gluten, he gets very sick, with nausea, cramping, diarrhea, headache, moodiness, gas, bloating...

In search of validation for his condition and his obvious gluten intolerance and "Celiac-like" symptoms, I figured he HAD to have the Celiac genes, for sure. Well, I had him tested and he doesn't have either one [DQ2 or DQ3 subtype 8 {DQ8)] he has DQ3 subtype 7.

All of this is to say that regardless of current conventional testing, nothing short of a miraculous response to a gluten-free diet is how we arrived at our diagnosis. My son doesn't eat gluten because when he does, he gets sick.

So, what I'm trying to share is that if you are putting all your hopes in a genetic test to convince your daughter she needs to go gluten-free, it may backfire and convince her you're totally crazy.

I suggest having her read the book Open Original Shared Link It gives a clear picture as to why more than just diagnosed Celiacs need to avoid gluten.

And remember, people all have to make choices. Although you and I know that a dietary change could do her a world of good... if she is in denial and does not understand or want to understand the ramifications of her dietary choices... it's her choice. Some people still smoke, drink, do drugs, eat fast food and sugary sweets all the while KNOWING it is not good for them. It's a lifestyle choice. It sure doesn't help that the choice could be life shortening.

God bless and I wish you the best in helping your daughter try to help herself by researching her symptoms and by experimenting with a dietary change!

Priscilla

burdee Enthusiast

RSAVAGE: You asked how to convince your daughter to have a genetic test. I agree with other posts here about showing your daughter info from celiac websites as well as posts here. However, I assume you mean Enterolab tests when you mention genetic test and gluten sensitive stool tests. I did that whole set of Enterolab tests and recall that the genetic test and stool sample test were simplest, least time consuming, least invasive medical tests I have ever taken. However, those were NOT cheap (and not covered by my health insurance). So perhaps the best way to convince your daughter to do the tests is PAY for those tests yourself, order them for her and help her package and send the results back to the lab. Most of all, order and pay for those tests for your daughter. Then she will have no choice but to do the easy part of taking the tests. ;)

BURDEE

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    • Jmartes71
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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
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