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

Can Symptoms Come And Go?

minivanmama0300

Recommended Posts

minivanmama0300 Newbie
minivanmama0300
Posted

Hi all!

Several months ago I started trying to figure out what was wrong with my almost 2 year old dd. She had several of the symptoms of Celiac/gluten intolerance. To test my theory I took her off gluten and to my delight she had her first solid BM in months, practically ever! Then her horrible rashes cleared up, the bloated belly went away, she became a happy dear!!! I then decided to have her tested for celiac before going gluten-free forever just to be sure. Well, they told me to put her back on. The first few days were awful again, same old symptoms. But then they went away!! Well, not all the way away but they are much better now. She has started having mainly solid bm's again, and they are not mucousy like before. She DOES still have odd rashes on her belly that come and go. She gets a rash around her mouth too. I noticed this rash months before her digestive problems began, so I wonder if she is "gearing up" for more since before the intensity of the rash mirrored the extent of her digestive problem. She is on a regular diet now I should add. So is it still a possiblity for her to have gluten intolerance if she is not have as bad of symptoms now? Anyone experiance that? I have the full gluten panel on its way from Enterolab, so I hope to know for myself soon, but I cant help but wonder if I am just dreaming this up. If it matters, the period when her symptoms were the worst was a very high stress time for us, and I have heard stress can trigger celiac. Things are much calmer here now.

Jess

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

Celiac.com Sponsor (A8-M):


minivanmama0300 Newbie
minivanmama0300
Posted
  • Author

and I would also love to hear anyone experiances with enterolab!

scaredparent Apprentice
scaredparent
Posted

I am also new to this but I know that my son had severe diahrea for 3 mo at a time and then it would slow way down for about a week or 2 and then it would start back up with a upper respitory problem and then the rash around the mouth and then the vomiting and then the diahrea and then 3 more months of that. It was an around the calander thing. My son is now 21 mo old and he has been tested by blood and biopsy and both came back negitive. We chose after 17 months of all the above we changed his diet to a gluten-free diet . He has been a total differnt kid. The dr said he doesn't have celiac disease but is glutten intolerent. But whether he has celiac disease or glutten intolerence he still has to be on the diet. He has been glutten free for almost a month and just after 4 days of gluten-free diet his stools started to form and the rash went away. If he accidedently gets glutten I know with in 10 min because the rash and diahrea will come back. It then takes about 4 days to get him back to normal. Your child sounds alot like my son. I say if the diet works put your child on the diet. My dr said to in about 5 years or about when he starts to school to try giving him glutten, if he gets sick we then will know he has to be on a gluten-free diet for the rest of his life. I hope this helps. As I said I am new and I am just learning but may be you can email me at dsaabbb2005@yahoo.com and trade reciepes and stories. I think our children are the same age and similar stories. Good Luck and take one day at a time.

minivanmama0300 Newbie
minivanmama0300
Posted
  • Author

Thank you so much for your thoughts! You know, last night at our local celiac support group meeting a man was mentioning that his symptoms were cyclical. Interesting! Have you had the testing from enterolab? One thing that attracted me was that it doesn't matter if you are fully on gluten for the test to be accurate. DD is eating a lot less gluten (she won't touch most breads or other obvious gluten products, which I find interesting since she is not even 2 yet and has made some connection there.) She still gets some though, and since she is not showing the horrible symptoms right now I am going to keep up the regular diet until we have our tests back. Thanks again! I would love to swap recipes sometime, I am early in the learning curve but am lucky to have a few moms of young celiacs in my support group to learn from!

Jess

Lynne Billington Newbie
Lynne Billington
Posted

The "cyclic" nature of this interests me too. I have a 13 yr old dd and last June she had a bout of a fatigue syndrome I'll call it. It last two weeks. She then got it again in Dec. for two weeks, February for two weeks, and she started again this week. BUT, I decided to play games with her food this time around. She was ill on Monday night, Tues. All day Tuesday I fed her gluten-free. On Wednesday she went to school and was fine. On Wed. night she wanted pasta. I fed her spaghetti. She was in bed most of Thursday. So, I fed her gluten-free on Thursday. She went to school on Friday. Now tell me it's not the gluten in her food! But I was amazed at how quickly she seems to react to the better. Is it really possible?

When I took her to the doctor in June, they couldn't find anything. Took her in December, they couldn't find anything and asked if it could be "mental" stress, etc. I told them no. Took her in February, couldn't really find anything and asked AGAIN if there was anything going on in school. "Does this happen when there's a test to take?" But he sent us to an infectious disease specialist at the local teaching hospital. She thought maybe it was cyclic neutropenia. Because there IS A LOW WHITE count each time, although the values do vary. And also, the differential is similar each time (whatever that means.)

Found an article the other day that says leukopenia can be a symptom of gluten, which is very similar to neutropenia. So the gluten could be causing the white count situation.

Sooooo, when the took blood on Tuesday, I requested the panel of blood tests be drawn for celiac. Haven't heard about that yet, just that her blood this time is similar to the previous times!

As a starting point, my husband has been having gluten problems severely since early December, that's where I got the idea to play with her food intake.

Thanks for listening.

Lynne :blink:

Archived

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

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


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • 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.
×
×
  • 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.