Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

What Do You All Think?

cjblack

Recommended Posts

cjblack Newbie
cjblack
Posted

I am brand new to this board and this is my very first post so I am going to bore you all with ALL the details. :D

William will be 18 months old on Jan. 2. At 10 months he started having daily diarrhea. Various colors, various consistancies,etc... My first thought was a bug so I took him to the ped. No bug try foods to firm him up (i.e. bananas, rice, applesauce, toast). I tried that for a while with no change. We then went to Disney World (my almost 5 yr old was granted a Make A Wish trip). Things only got worse while we were there. Upon coming home I made an appt. to have William allergy tested. Allergy testing showed positive reactions to apples and bananas. I pulled those from his diet, with no change. I then tried pulling dairy from his diet (big brother is HIGHLY dairy allergic). Still no change, so we called a ped GI. It was late October before we got in. This guy was a flop so I found anew doc. who got him in within 2 weeks. We have seen her several times and William is being scoped on Jan. 4!

Now he has had poor weight gain (he is barely 20 lbs). His poops have ranged from mush to water ALL smelling AWFUL. Color varies. He great terrible diaper rash that takes, what seems like forever, to clear up. The past 2 wks have been particularly bad. 4-8 runny diarrhea diapers a day. Rash so bad we had to see the ped (GI was out for Christmas) for a Rx cream. We HAVE NOT pulled gluten because of the upcoming scope.

His blood work was normal, but since he is under 2, I have read that the blood work can be wrong...

For the record he can not eat tomatos or chocolate either. Both produce GI reactions and a rash.

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

Celiac.com Sponsor (A8-M):


celiacgirls Apprentice
celiacgirls
Posted

Welcome! You will find a lot of information here.

I suggest you try him on the gluten free diet after the scope regardless of the results. It's possible for the biopsy to be negative but still have at least a gluten intolerance.

My daughter was never scoped but did have numerous negative blood tests. She has a positive dietary response to gluten.

Juliet Newbie
Juliet
Posted

We were told by our ped G.I. and another ped G.I. Dr. Michele Pietzak (she's one of the pediatric Celiac experts on the west coast [possibly THE expert on the west coast Open Original Shared Link]) that being gluten free even for a little while can mess up the blood tests, but the intestine will show damage for six months to a year even with a completely gluten free diet. For the blood tests to be at their most accurate, Dr. Pietzak said to have the equivalent of at least two pieces of wheat bread daily for 2 months before taking it, but this was not as necessary for the biopsy. The moment we were told our son possibly had Celiac Disease (tTG was high - at 153), we put him on a gluten free diet. He was so sick at the time that he was hospitalized, so honestly we didn't care if it messed up the results or not - if he was going to get better quicker by putting him on this diet we were going to do it. And our ped G.I. didn't have a problem with us going gluten free before the biopsy either. Three and a half weeks later the biopsy was completed and it turned out positive, but we saw positive results from the diet within a week and a half. If it's not too long from now that the biopsy is performed, you may just want to put him on a gluten free diet anyway. It's a tough call, though. I think it depends on how much you really need an official diagnosis or not. I'm of the opinion that if it works, it doesn't really matter what it is or called. But my sister, who's studying to be a nurse, has to know exactly what is going on, so in the end it's what you think is best.

cjblack Newbie
cjblack
Posted
  • Author

If the scope doesn't show anything then our next step is a gluten free diet. We don't have a great health food store around here so I will have to learn how to do alot of things from scratch.

Thankfully, William seems to feel pretty good, most of the time. For that I feel very lucky. I am anxious to know what is going on and learn how to fix it.

GFBetsy Rookie
GFBetsy
Posted

Don't worry about "having" to make things from scratch . . . gluten free things made from scratch tend to taste WAY better than the pre-made things anyway.

Congrats on the up-coming scope date . . . let us know how things turn out.

cjblack Newbie
cjblack
Posted
  • Author
Don't worry about "having" to make things from scratch . . . gluten free things made from scratch tend to taste WAY better than the pre-made things anyway.

Congrats on the up-coming scope date . . . let us know how things turn out.

Will do! We see the GI this afternoon for a pre scope check up.

cjblack Newbie
cjblack
Posted
  • Author

Here is the rundown from the doctor:

William is having an upper scope done on Thursday morning. The doctor is taking multiple biopsies all the way down. She is slightly questioning some of his lab work from back in September (done by another doctor). Particularly his Lymphs and Segs. as she says that by now his Segs should be the higher number. No word on if she wants to rerun the bloodwork. She is also slightly questioning William's Total IgA on his Celiac panel. Doctor says normal is 80-220 mg/dL and William's was 75. Not a big deal but it gives her pause.

Many of the tests run on the biopsies will be done locally, however the lactose test is done in New York. The local stuff we should have back in 2-4 days. The stuff going to New York could be same day or many days later. Doctor says they are not predictable. She has promised to call the minute she gets results so I am hopeing I will not have to wait all weekend.

There's the scoop on the scope.

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

Celiac.com Sponsor (A8-M):


cjblack Newbie
cjblack
Posted
  • Author

William had his scope this morning and everything, visually, is perfect. Now we are just waiting on biopsy results. They will be in sometime next week.

GFmum Newbie
GFmum
Posted

Good luck with the results. I hope you get a solution to those aweful symptoms. Keep us updated!

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Jess270
      - Jess270 replied to AnnaNZ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      29

      Bitters for digestion?

      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions...
    2. cristiana
      - cristiana commented on Jefferson Adams's article in Origins of Celiac Disease
      7

      Why Bananas No Longer Cure Celiac Disease

      I missed this article when it was first put up. It is interesting to read, as my old neighbour who sadly passed away a few years ago was a trainee midwife during WWII. Bananas disappeared from the shops in Britain during the war, but she told me that those that did get to the UK were kept back for infants with coeliac disease. I didn't realise that...
    3. trents
      - trents replied to Dawn Meyers's topic in Related Issues & Disorders
      23

      Vaccines

      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    4. GeoPeanut
      - GeoPeanut replied to Dawn Meyers's topic in Related Issues & Disorders
      23

      Vaccines

      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease, and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with...
    5. trents
      - trents replied to KRipple's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac or Addison's complications? Can someone share their experience?

      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,054
    • Most Online (within 30 mins)
      7,748
    Carlie
    Newest Member
    Carlie
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jess270
      Bitters for digestion?

      By Jess270 · Posted

      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions you describe, flu like symptoms, joint pain, urinary tract irritation, rash, stomach upset, nausea, diarrhoea & fatigue. I had liver pain like you describe, as part of the intolerance is usually a sluggish liver that makes processing all the histamine difficult. There are multiple possible root causes of histamine intolerance, usually it’s a symptom of something else. In my case, leaky gut (damaged gut wall)caused by undiagnosed celiac, but for others it’s leaky gut caused by other things like dysbiosis. Some people also experience histamine intolerance due to mould exposure or low levels of DAO (the enzyme that breaks down histamine in the gut). I’d try a low histamine diet & if that doesn’t improve symptoms fully, try low oxalate too. As others have suggested, supplements like vitamin d, b, l-glutamine to support a healthy gut & a good liver support supplement too. If you’re in a histamine flare take vitamin c to bowel tolerance & your symptoms will calm down (avoid if you find you have oxalate intolerance though). Best of luck 
    • trents
      Vaccines

      By trents · Posted

      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    • GeoPeanut
      Vaccines

      By GeoPeanut · Posted

      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease,  and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and  dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with myopathy that has occurred. 
    • trents
      Celiac or Addison's complications? Can someone share their experience?

      By trents · Posted

      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
    • kate g
      Are they close to a drug that will help celiacs with cross contamination

      By kate g · Posted

      Ive read articles that there is stage 2 research being conducted for drugs that will limit damage to celiacs through cross contamination- how close are they to this will there be enough funding to create a mainstream drug? 
×
×
  • Create New...