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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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    • knitty kitty
      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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