Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Brainstorming, Help Me Sort Through Potential Clues

brendab

Recommended Posts

brendab Contributor
brendab
Posted

Ok, so I am on the verge of taking my son to the doc on the 27th to discuss his possible celiac, definitely intolerance and I know I am at least intolerant. I'm concerned about not being properly diagnosed with Celiac's if we are at all. I want to know the benefits and pitfalls of a diagnosis.

My 2 year old son has always had GI issues and with suspicious yellow, mothball smelling poo. I won't recap because I have already posted a long post with pics in another thread. :) I'm taking him to the ped. on the 27th to discuss whether I ought to take him to a GI doc or not for testing. He's been off of gluten for about 18 months so I doubt any test would show up positive for him for proper diagnosis and I don't want to put him back on just to make it positive but I need to know if having a diagnosis would be worth it for anything? Does he need proof for anything in life? I know he's only 2 now but what about later, when he's older?

For me, here are my thoughs for myself: I was adopted when I was five years old and my mom (adoptive) described me as being the size of a 2 year old, weighing only 26 pounds. I still have my first Christmas dress from after my adoption and the size on it is 2T. No kidding! She also described me as looking like a starving Ethiopian child: big belly, small body everywhere else and my hair would fall out in clumps. I was a very picky eater when I was very young but started eating most everything as I grew up. Now, I don't recall too many sickly days but I would have many times where I would feel cramping and I dismissed it as anxiety while waiting for the bus in the morning and I had to run to use the toilet then I seemed to be fine after that. I don't recall stomach cramping or pains. As an adult, in retrospect and after learning much here I am finding I have symptoms in common with many of you and have gone gluten-free then trialed it to find stomach pain, gas and constipation as the physical symptoms. I am getting headaches, brain fog, general stupor, anxiety, etc. Now, I just had a baby 5 months ago and my hair is falling out BAD! I know some is normal but I don't recall after my last 5 babies having THIS much falling out. This could be nothing. I've been off of gluten off and on for years, this past time I've been off for 3 months and trialed wheat with my baby (she has other delayed allergies and I was doing an elimination diet for her) and so I brought wheat back into my diet to find the poor baby had gas and D, then I am having my stomach pain, intestinal discomfort, C and BAD gas!!!! I'm not wanting to go back on gluten because it involves my nursling but may consider it after weaning but that will not be for a long time as she's only 5 months now.

Oh gosh, what am I missing? My main concern right now is my 2 year old son. I forgot to mention he has a huge belly with what we joke around about a crack up the back. It's hereditary for the men on my husbands side of the family to look like this but now I wonder if it's just physical genetics for something more?

I know I have more thoughts but cannot recall them, I have to get kids to camp but will be back!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

For your general peace of mind, go through testing with the pediatric gastro. There are a few things that can cause the same symptoms as Celiac or gluten intolerance. Some other disorders/diseases can also have a "gluten trigger". It could be possible to have a gluten allergy.

If you can find out exactly what you are dealing with you will know if you are doing everything possible for your child's well being.

In my daughter's case she was diagnosed as probable Celiac at 17 months. She was too sick to do the endoscopy with biopsy and was diagnosed with the elevated levels of the Celiac panel and genetic testing (positive for DQ2 and DQ8). Then when she was about 5 and a half years old she started what seemed like gluten reactions that lead to vomitting about 5 times a day like GERD. She was diagnosed with Eosinophilic Esophagitus when she was 6.

cassP Contributor
cassP
Posted

YES- as above poster stated- u definitely need to get yourself and kids checked for Celiac, etc....

but also to MAYBE calm your nerves a little (of course u need to get checked- as hair falling out can be a symptom of celiac or thyroid problems)- i ALSO read- that u shed excess hair after having a baby- that while you are pregnant- u dont shed any hair- so your hair seems thicker than normal, and then after having the baby- you shed it all....

brendab Contributor
brendab
Posted
  • Author

But I don't know if putting him through weeks of eating gluten would be the best for him either. I am so confused! Yes, a proper diagnosis would most certainly give me peace of mind as I hate maybe's in life. I don't know what to do. I am hoping his ped. will be able to give me more information.

Skylark Collaborator
Skylark
Posted

Your own symptoms are textbook celiac. I'm a little surprised you weren't diagnosed, as a super-skinny, undersized kid with a big belly and hair falling out is what doctors are taught celiac "should" look like. Don't go back on gluten. You'll just make yourself sick.

Maybe you should look at the genetic testing. It's not diagnostic but if you have symptoms that classic you're likely to have at least one of the major celiac genes and you can look for it in your son.

brendab Contributor
brendab
Posted
  • Author

Your own symptoms are textbook celiac. I'm a little surprised you weren't diagnosed, as a super-skinny, undersized kid with a big belly and hair falling out is what doctors are taught celiac "should" look like. Don't go back on gluten. You'll just make yourself sick.

Maybe you should look at the genetic testing. It's not diagnostic but if you have symptoms that classic you're likely to have at least one of the major celiac genes and you can look for it in your son.

How is that test performed? Can they diagnose my son as Celiac that way so I don't have to purposefully hurt him? (if the genes are there)

I don't recall many visits to the Dr. as a child and I do remember my mother telling me that she took me to the Ped. because I wouldn't eat anything but a few foods and he told her not to worry, it was a phase due to my age. I remember sitting at the table many times trying to eat but my stomach felt off, not necessarily sick but I just remember not wanting to eat. Maybe that is my earliest memory of being sick? I don't know.

Gardening Apprentice
Gardening
Posted

With the clumps of hair faling out post-partum (more so than previous pregnancies) you should get your thyroid checked, too.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

How is that test performed? Can they diagnose my son as Celiac that way so I don't have to purposefully hurt him? (if the genes are there)

I don't recall many visits to the Dr. as a child and I do remember my mother telling me that she took me to the Ped. because I wouldn't eat anything but a few foods and he told her not to worry, it was a phase due to my age. I remember sitting at the table many times trying to eat but my stomach felt off, not necessarily sick but I just remember not wanting to eat. Maybe that is my earliest memory of being sick? I don't know.

The genetic test is not diagnostic. What it does is give you an idea of risk. If you have DQ2 or DQ8 and your son has the same thing, you have pretty good reason to be suspicious that his problems are celiac.

The nice thing about the genetic test is that it's done from a blood sample or cheek swab and does not require you to consume any gluten. The bad thing is that anyone can have celiac, no matter what their DQ genes are, and people with DQ2 and DQ8 don't always have celiac. It's just more common with DQ2 or DQ8. If you and your son turn out not to have DQ2 or DQ8 you won't really learn much.

brendab Contributor
brendab
Posted
  • Author

With the clumps of hair faling out post-partum (more so than previous pregnancies) you should get your thyroid checked, too.

I've had it checked twice with normal results. I'm tired of picking hairs off of my sheets, pillow, brush and clothes.

brendab Contributor
brendab
Posted
  • Author

The genetic test is not diagnostic. What it does is give you an idea of risk. If you have DQ2 or DQ8 and your son has the same thing, you have pretty good reason to be suspicious that his problems are celiac.

The nice thing about the genetic test is that it's done from a blood sample or cheek swab and does not require you to consume any gluten. The bad thing is that anyone can have celiac, no matter what their DQ genes are, and people with DQ2 and DQ8 don't always have celiac. It's just more common with DQ2 or DQ8. If you and your son turn out not to have DQ2 or DQ8 you won't really learn much.

Do we have to visit a GI for this test or can any doc do this test?

Skylark Collaborator
Skylark
Posted

Do we have to visit a GI for this test or can any doc do this test?

If your insurance covers it, any doc can order it. You may find a GI doc more willing, as they're usually a little more familiar with the celiac genetics.

You can also buy the tests yourself, although they usually run $200-$300. Here is an article you might find helpful.

https://www.celiac.com/articles/21567/1/Ten-Facts-About-Celiac-Disease-Genetic-Testing/Page1.html

brendab Contributor
brendab
Posted
  • Author

If your insurance covers it, any doc can order it. You may find a GI doc more willing, as they're usually a little more familiar with the celiac genetics.

You can also buy the tests yourself, although they usually run $200-$300. Here is an article you might find helpful.

https://www.celiac.com/articles/21567/1/Ten-Facts-About-Celiac-Disease-Genetic-Testing/Page1.html

Thank you for your help! Now I have to wait until the 27th; 2 more weeks! (I hate waiting!)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,543
    • Most Online (within 30 mins)
      7,748
    yfuvhg
    Newest Member
    yfuvhg
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.