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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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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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