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

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

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

scaredparent Apprentice

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

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,861
    • Most Online (within 30 mins)
      7,748

    Priscilla Buxton
    Newest Member
    Priscilla Buxton
    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

    • Rogol72
      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.