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

Stupid, Stupid Doctor

AliB

Recommended Posts

AliB Enthusiast
AliB
Posted

Oh Boy.

My little grandson, Connor, is just 7. He was getting terrible bowel problems, constantly messing himself. When I discovered that I am Celiac/GI, I suggested to my daughter that she get him tested and try him on a gluten-free diet.

She took him to the Doctor at the end of April (a locum) and he agreed that in view of the family link (my Mum was almost definitely Celiac) it would be a good idea to get him checked out. He arranged for her to take Connor to the hospital to have his blood taken and also to see a Pediatrician.

The blood test came back 2 weeks later and the Doctor said that everything seemed fine but to still see the Ped, as my daughter said that he did seem to be better on gluten-free. The appointment to see him is next Monday.

Today she thought it would be a good idea, especially as she is still undecided whether it is gluten that is the problem or just stress (and at my prompting), to find out what the actual results were of the test.

The receptionist gave her a print-out of the results - and no-where on it does it list the Celiac Panel. There must be 30 different results, and not one of them was for Celiac! Our daughter said that when the Doc gave her the blood request sheet she didn't see anything on it about Celiac.

He ticked all the normal test boxes, but they usually have to write 'Celiac' as a separate request on the sheet. She rang the Surgery again and spoke to another receptionist who was more knowledgeable - her daughter has been tested for it - and she looked at the results and couldn't find anything about Celiac either!

So now it looks like poor little Connor is going to have to start all over again eating gluten and going through months of all this constant diarrhea and the stress involved, just so they can do it all over again.

AAAAAARGH!

This Doctor obviously did his Celiac Training on the Planet Zog!

Sorry - just needed to vent................

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

Celiac.com Sponsor (A8-M):


lizard00 Enthusiast
lizard00
Posted

Ali, I'm so sorry to hear that. Doctors can make our lives most difficult sometimes!!! I hope your daughter makes some progress quickly. It's so tough to see our kids sick.

Sending hugs your way!!!

My little guy is Connor too!! What a fantastic name B)

Ridgewalker Contributor
Ridgewalker
Posted

Ohh, Ali, I'm so sorry that happened!!! :(

I'll be thinking about poor Conner!

One thing to keep in mind, is if your daughter puts him back on full-time gluten, Conner may show worse symptoms than before. Maybe that would be enough to convince her..?

jerseyangel Proficient
jerseyangel
Posted

Ali, that's terrible...poor Connor :( What the heck did the doctor think he was testing for....did everything your daughter said go in one ear and out the other? :angry:

I hope it won't be too hard on him--is he off gluten right now? If so, how does he do off of it?

Emilysmomma Rookie
Emilysmomma
Posted

There seem to be so many experiences like this out there, I am thankful that we had good Gastro doctors that worked with us, our transition was so much easier. I hope that they are able to find out for sure this time so that he can know one way or the other. I don't know how they make those kind of mistakes, especially when you specifically ask for him to be tested for that!

AliB Enthusiast
AliB
Posted
  • Author
Ali, that's terrible...poor Connor :( What the heck did the doctor think he was testing for....did everything your daughter said go in one ear and out the other? :angry:

I hope it won't be too hard on him--is he off gluten right now? If so, how does he do off of it?

I think it is definitely gluten that is the catalyst for his diarrhea and stomach ache issues. When he has been here during the school breaks and on a guaranteed gluten-free diet he is fine. Generally he has been better when back home and at school apart from the occasional accident and some irritability - we are never sure whether that it is a glutening either from school meals (he has been given dispensation for special diet and is supposedly on gluten-free at school) or perhaps from odd snacks from other kids' lunches (well he is only 7!)

Low blood sugar does seems to be a problem for him and he often wakes up very grumpy and is usually in a foul mood when he comes out of school at the end of the afternoon! His Mum was exactly the same. I don't know if dairy is an issue or not - certainly it doesn't seem to be that obvious.

She is selling their house and hopes to be up with us by the Summer recess so I am hoping that we can really get to grips with it all. I am convinced because I know how gluten affects me, but because she does not get any obvious symptoms (although I am convinced that GI is behind her emotional and hormonal issues), I'm not sure she is as rigorous or disciplined with it as I am. She has been trying to stick to it for Connor though.

In some ways perhaps having to put him back on it and monitor his response for a while might just be enough to convince her (and convince her to get tested herself!)

purple Community Regular
purple
Posted

I totally agree with what everyone else said. Poor Conner. But one good thing is for sure, at least you know things now and not after 2 or 5 or 10 or 20 + years like others, before he got worse.

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

Celiac.com Sponsor (A8-M):


AliB Enthusiast
AliB
Posted
  • Author

Absolutely - took me 50 years to figure mine out! That's why I was able to get my daughter to take it more seriously for him.

NewGFMom Contributor
NewGFMom
Posted

If he has celiac with positive serology, it can take a year (it did for my son) for his TTG to go back to normal. So, if he's only been gluten-free for a month, I think it's OK to do the full ELISA panel now. You have a good chance of getting an accurate result if it's positive.

If it's negative, you can continue with the diet and let him do a gluten challenge if he wants to when he's older.

Archived

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

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


  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748
    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    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.