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Could We Be Undiagnosed?


robynrn

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robynrn Newbie

Hi I am new to this web site and I am looking for answers. I am borderline iron-defient anemic, and my daughter has iron deficiency anemia, and no one seems to know why. We do not have the typical bowel problems most people with celiac disease have, but we both do have constipation, bloating and gas. My daughter is very young and she already has 7 cavities, she is very irritable, and we are both very tired people. I am an RN, but have not encountered anyone who (knowingly) has celiac disease. I just want to know if I should put my daughter through all kinds of testing to figure out if she does have celiac disease, or if I should be tested first, and if I have it get her tested. I would really like to know your opinions. Thank you.


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VydorScope Proficient
Hi I am new to this web site and I am looking for answers. I am borderline iron-defient anemic, and my daughter has iron deficiency anemia, and no one seems to know why. We do not have the typical bowel problems most people with celiac disease have, but we both do have constipation, bloating and gas. My daughter is very young and she already has 7 cavities, she is very irritable, and we are both very tired people. I am an RN, but have not encountered anyone who (knowingly) has celiac disease. I just want to know if I should put my daughter through all kinds of testing to figure out if she does have celiac disease, or if I should be tested first, and if I have it get her tested. I would really like to know your opinions. Thank you.

Yes. Get teh blood test, and make them do the full Celiac Panel. It only take like 5 mins of your time. Do not do the diet before the test as it will impact the results.

Anemia was my first sympton, and for a while my only one.

Guest Viola

You and your daughter should really do the full blood panel. Symtoms are really varied among all of us, and only about 1/3 have the big D, a lot more are constipated, or have no bowel problems at all, just vitamin and mineral defiencies. And do the blood work before you try a gluten free diet, as my cute little friend said :D

That picture makes me smile :lol:

mart Contributor

Hi Robynrn. My son was also very irritable and had many cavities, despite the fact that we took such excellent care of his teeth. He also had lots of ear infections. This went on for the first six years of his life. He didn't exhibit any signs of celiac until he was 7, when his tummy problems started. He didn't grow from ages 4 - 7, and his doctors didn't find this to be a problem. I guess I'm should be grateful he started exhibiting stomach problems, otherwise, he still might be undiagnosed. So just because someone doesn't have all the symptoms doesn't mean they shouldn't bother testing. Also, most celiacs have few or no symptoms (which is why there are so many undiagnosed). You and your daughter should have the test ASAP. Remember that you must not start the gluten-free diet before your tests, otherwise the test may come back positive. Don't wait, and good luck!

Sorry, I meant to say the test might come back NEGATIVE if you start the diet before the test!

mommida Enthusiast

I would start by contacting your local Celiac support group for a doctor in your area familar with celiac disease. Get the blood test, follow the specialists advice, no matter how that goes you can always try the gluten free diet. There are just too many people doing better on a gluten free diet, than are actually diagnosed.

L.

Nancym Enthusiast

Get the blood tests but if they're negative, don't stop there. Try a couple of weeks on a strict gluten free diet and see how you feel. The blood tests don't pick up everyone.

robynrn Newbie
I would start by contacting your local Celiac support group for a doctor in your area familar with celiac disease. Get the blood test, follow the specialists advice, no matter how that goes you can always try the gluten free diet. There are just too many people doing better on a gluten free diet, than are actually diagnosed.

L.

Thank you all for your advice, I guess part of me is in denial because I love pasta, pizza and bread etc, etc. But if it makes us feel better than it is worth it, I will keep you posted on how opur tests come out!

Robyn

p.s. don't worry I will continue to eat gluten until I get the tests done!


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    • trents
      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
    • trents
      Another great fiber option is dried apricots. Four of them give you 3g of fiber and I find they don't produce all the gas that some other high fiber options do. They taste good too. Costco sells a large bag of them that are labeled gluten-free so you don't have to worry about cross contamination issues like you might in bulk grocery settings.
    • Trish G
      Wow, that's alot of info, Thanks!!!! I had my intake with Nutrionist where we went over basics and then will have follow up where we will talk about all the questions I've come up with (including the fiber question and so many more). I'll talk to her about the info you provided as well.  Thanks again (newbie here 😀)
    • Hmart
      Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 10/24, I have been strict about being gluten free - so about a month. I have been eating dairy free and low FODMAP as well because it’s what my stomach allows. Baked fish, potatoes, rice, etc. Whole foods and limited Whole foods. I have continued to lose weight but it has slowed down, but a total of about 15 pounds since I went gluten free. Along with stomach pain, my symptoms included nausea, body and joint pain, a burning sensation throughout my body and heart rate spikes. I still have them but I have them less now. These are the symptoms that led to my doctor appointments and subsequent diagnosis. I also did the DNA screening and was positive. So, at this point, the answer is yes, I have celiac. I have two questions for this group. Any ideas on why my enteropathy was so severe (marsh 3B) and my TtG was so minimal? Is that common? Or are there other things to consider with that combo? And this recovery, still having pain and other symptoms a month later (7 weeks gluten free and 4 weeks after the glutening) normal? I’m going to continue down this path of bland foods and trying to heal but would love to understand the reasons for the long journey. I read so much about people who stop eating gluten and feel amazing. I wish that was my experience but it certainly hasn’t been. Thank you again!
    • knitty kitty
      @Trish G,  I like dates, they have lots if fiber as well.  But what I found helped most was taking Thiamine (in the form Benfotiamine which helps promote intestinal healing), Pyridoxine B 6, Riboflavin B 2, and magnesium, and Omega Three fats. The absorption of nutrients is affected by Celiac disease which damages the intestinal lining of the small intestines where our nutrients are absorbed.  If you have constipation, where your body is rather pushing your food away and not interacting with it, the nutrients in the food are not being released and absorbed.  You can develop deficiencies in all the vitamins and minerals necessary for the body to function properly.   The B vitamins cannot be stored for long, so they must be replenished daily.  Thiamine B 1 stores can run out in as little as three days.  Constipation (or diarrhea or alternating) is one of the first symptoms of thiamine deficiency.  Thiamine needs magnesium, Pyridoxine B 6, and Riboflavin B 2 to make the intestinal tract function.  Thiamine and Niacin make digestive enzymes.  Thiamine provides the energy for nerve impulses to carry messages to the brain and back about digestion.  Thiamine provides the energy for the muscle contractions which move your food through the digestive tract. High calorie meals containing lots of starches and sugars can deplete thiamine stores quickly because more thiamine is required to turn them into energy.   Are you taking any vitamin and mineral supplements?  Correction of malnutrition is very important in Celiac disease.  Thiamine, the other B vitamins and magnesium will help with constipation better than adding more fiber.  What did your nutritionist recommend you take, besides just the fiber? The association between dietary vitamin B1 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11100033/ Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Association between dietary vitamin B6 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11584952/
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