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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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    • Scott Adams
      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
    • suek54
      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
    • MicG
      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
    • trents
      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
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