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

celiac disease Symptoms Coming Back

shorebird

Recommended Posts

shorebird Apprentice
shorebird
Posted

For 10+ years I had terrible symptoms that I had no idea what they were caused by, leaving doctors stumped. I had everything from diarrhea, vomiting, severe abdominal pain, joint pain and inflammation, numbness and tingling in my toes, bone pain, sore tongue, burning gums, inability to gain weight, and acid reflux. I had a normal HIDA scan, normal liver, a small cyst in my gallbladder, H. Pylori in stomach, gastroparesis, and gastroenteritis. Finally at the age of 21 I was referred to a GI doctor and the first test he did on me was an endoscopy. It came back showing flattened villi in my small intestine and all he said to me was "it looks like Celiac Disease" then left it at that. I went back to him two weeks after having gone on a gluten-free diet and told him I was feeling better. I basically got no response from him and it didn't seem to matter to him either way if I felt better or not. But I continued to eat gluten-free and after a few months, I felt "normal" again. After nearly 5 years of being gluten-free, I've noticed my symptoms are coming back. They're not as severe and not all are back, but I'm still feeling sick.  I have abdominal pain, diarrhea/constipation, and I've noticed if I don't take my B-complex vitamin I get irritability and mouth soreness. I don't ever go out to eat, I make most everything from scratch, and the only processed foods I eat are ones that are certified gluten free. I've thought about going on an elimination diet, but I'm breastfeeding and don't want to disturb the quality or quantity of my milk. Why are my symptoms coming back after all this time? Has anyone else had the same experience? What was the outcome?

 

Thanks in advance.

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

As time goes on, some people get more sensitive. That could be it. You could have developed another food sensitivity, some do.

My sneaking suspicion is thyroid or another AI disease - perhaps triggered by pregnancy/childbirth/motherhood. Docs like to chalk exhaustion, etc. up to motherhood but truth is motherhood is a trigger for AI diseases and they hide behind the guise.

So, perhaps keep a food log, and ask for a complete thyroid work up - tpo antibodies, tsh, free t3/t4. It is not uncalled for - having celiac is reason enough for a work up.

If it isn't your thyroid, I'd dig Ito the food log and consider you are going through an "autoimmune phase" - meaning you are struggling to recover from pregnancy, etc.

Your body has been stressed. Motherhood does that. Your body just did something monumental.

The reason I bring up thyroid is that it happens (when it happens) quite frequently after childbirth. And the symptoms heavily overlap with Celiac. And from personal experience. In retrospect, that's when my thyroid started nosediving.

shorebird Apprentice
shorebird
Posted
  • Author

As time goes on, some people get more sensitive. That could be it. You could have developed another food sensitivity, some do.

My sneaking suspicion is thyroid or another AI disease - perhaps triggered by pregnancy/childbirth/motherhood. Docs like to chalk exhaustion, etc. up to motherhood but truth is motherhood is a trigger for AI diseases and they hide behind the guise.

So, perhaps keep a food log, and ask for a complete thyroid work up - tpo antibodies, tsh, free t3/t4. It is not uncalled for - having celiac is reason enough for a work up.

If it isn't your thyroid, I'd dig Ito the food log and consider you are going through an "autoimmune phase" - meaning you are struggling to recover from pregnancy, etc.

Your body has been stressed. Motherhood does that. Your body just did something monumental.

The reason I bring up thyroid is that it happens (when it happens) quite frequently after childbirth. And the symptoms heavily overlap with Celiac. And from personal experience. In retrospect, that's when my thyroid started nosediving.

Thank you for replying. I'd never really considered how pregnancy and birth could have triggered some kind of flare up. I always figured I was fine as long as I remained gluten-free, but the stress of pregnancy/birth does make sense in how it could cause that. The only strange thing is my symptoms didn't come back right after my baby was born. It wasn't until I was 7 or 8 months postpartum when I noticed I started to feel sick again. I'm looking into finding a doctor where I live that is knowledgeable about celiac disease so when I do see one I will ask to have my thyroid checked and see if it could also be another autoimmune disease (I hope not though). I'm hoping I've just developed a new food sensitivity so I can eliminate that and get better. I started a food diary earlier this week so if it is something I'm eating, hopefully I can figure out what it is.

pricklypear1971 Community Regular
pricklypear1971
Posted

Please ensure the doctor runs a full panel. Tsh is NOT enough. You need to know if you have thyroid antibodies, and your t3/4 levels. Insist on it.

dilettantesteph Collaborator
dilettantesteph
Posted

You could also consider super sensitivity.  My son and I, for example are super sensitive and react even to the tiny levels allowed in certified gluten free foods.  Keeping a food/symptom journal and doing elimination/challenge diets can help to sort that out.

mommida Enthusiast
mommida
Posted

We had been gluten free for about 5 years and everything seemed fine.  My daughter diagnosed at 16 months old was now 6 and getting symptoms back.  These were the same symptoms of Celiac.  She was vommitting too.  Constipation/ "D", "whole stomach hurt", dark circles under her eyes, headaches, she did say her throat hurt and doctors would say her strep test was negative but she had a MAJOR throat infection that had to be strep because of small white patches, swollen belly,  she touched her hair and a clump fell out, weight loss, and I'm probably forgetting more symptoms.  I searched for hidden gluten that had to be making her sick and back to ped. GI for more testing.  Diagnoses = Eosinophilic Esophagitus.  Celiac and EE are now showing a link.  In fact all new cases of EE should be screened for Celiac.  EE has "triggers" , like gluten is the "trigger" for Celiac (and for some patients EE)

 

Go back for testing.  Pregnancy can really put hormones out of whack and flare/trigger auto-immune disease.  Be wary of doctors opinion on your thyroid test results.  Doctors are going to expect your thyroid activity to be higher postpartum.  Get your test results and ask when your next thyroid check should be.

shorebird Apprentice
shorebird
Posted
  • Author

You could also consider super sensitivity.  My son and I, for example are super sensitive and react even to the tiny levels allowed in certified gluten free foods.  Keeping a food/symptom journal and doing elimination/challenge diets can help to sort that out.

I know I've seen on some products labeled "gluten free" that they can still contain minuscule amounts of gluten but I don't believe I've seen that on any gluten-free foods I'm currently eating. Are all certified gluten-free foods like that? Are any of them truly safe to eat? Sometimes I feel as if I should just resign myself to eating bowls of lettuce for the rest of my life ha.

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

Celiac.com Sponsor (A8-M):


shorebird Apprentice
shorebird
Posted
  • Author

Today I ate some oatmeal (Bob's Red Mill) and my symptoms worsened. I noticed in my food diary the last time I ate oats I had a similar reaction. I'm wondering if that could be the culprit. I don't think I'll know for sure until I do some more sleuthing and cut oats out of my diet. Fingers crossed it's just the oats causing me problems.

mommida Enthusiast
mommida
Posted

The protein chain of oats can be too similar to the gluten protein.  Some Celiacs can not tolerate oats.

 

Gluten free oats were at one time very hard to find.  Hadn't had oats in over 5 maybe 6 years.  Had to re introduce it to my system by adding a small amount at a time.  (the suggestion and directions were on the bag for building tolerance.)

dilettantesteph Collaborator
dilettantesteph
Posted

I know I've seen on some products labeled "gluten free" that they can still contain minuscule amounts of gluten but I don't believe I've seen that on any gluten-free foods I'm currently eating. Are all certified gluten-free foods like that? Are any of them truly safe to eat? Sometimes I feel as if I should just resign myself to eating bowls of lettuce for the rest of my life ha.

 

Just because a product is labelled gluten free doesn't mean that it has been tested for gluten.  In fact, at the moment it doesn't mean much of anything at all.  There is a proposed allowable gluten level, but regulations have not been passed.  The "processed in a facility..." statement is voluntary.  It not being there does not mean that there is no gluten in the facility.  As far as "safe to eat" that all depends on your personal sensitivity level as well as other possible intolerances. 

 

I believe that I have been made sick by a small bite of something that was tested by the company to contain less than 20 ppm gluten, that was certified gluten-free from a gluten-free facility.  Then again, I am particularly sensitive, and certainly the vast majority of celiacs would not have the same problem.

 

I use elimination/challenge diets as mentioned above to come up with a diet that is safe for me, and my son too.

lynnieloo Newbie
lynnieloo
Posted

Thank you for replying. I'd never really considered how pregnancy and birth could have triggered some kind of flare up. I always figured I was fine as long as I remained gluten-free, but the stress of pregnancy/birth does make sense in how it could cause that. The only strange thing is my symptoms didn't come back right after my baby was born. It wasn't until I was 7 or 8 months postpartum when I noticed I started to feel sick again. I'm looking into finding a doctor where I live that is knowledgeable about celiac disease so when I do see one I will ask to have my thyroid checked and see if it could also be another autoimmune disease (I hope not though). I'm hoping I've just developed a new food sensitivity so I can eliminate that and get better. I started a food diary earlier this week so if it is something I'm eating, hopefully I can figure out what it is.

I don't know if this could have anything to do with it, but you mentioned you are still breastfeeding (good for you!) . . . . what is your baby eating other than breastmilk?  If it contains gluten, could you be absorbing that?  I'm really new (Dx'd 2 weeks ago) so this may be a crazy thought . . . . 

shorebird Apprentice
shorebird
Posted
  • Author

I don't know if this could have anything to do with it, but you mentioned you are still breastfeeding (good for you!) . . . . what is your baby eating other than breastmilk?  If it contains gluten, could you be absorbing that?  I'm really new (Dx'd 2 weeks ago) so this may be a crazy thought . . . . 

My baby is eating solids, but only fruits/veggies and just recently I started giving him gluten free rice cereal puffs so he can practice his pincer grasp. I've been careful to not give him any gluten since I don't want to increase his risk of developing celiac. He's 9.5 months now and I don't think I'll be giving him gluten until he's two or three so he can tell me if the gluten gives him problems. Even if he did somehow ingest gluten, it wouldn't be transferred through the skin. However, it could be transferred to me if he were to eat gluten and then kiss me on the mouth. Same goes with my husband, I'm always really careful to not kiss him when he's eating anything that could make me sick. Gluten can really only be transferred if it goes into the mouth. Although I'm sure some people may get a rash if it comes in contact with their skin. I've even had a reaction just from breathing in the dust from wheat flour.

Sarah Dee Newbie
Sarah Dee
Posted

So I am new to this community, so if I babble or write on the wrong blog-please chalk it up to that :)
 I was diagnosed last April (after years of symptoms and dumb doctors) and went on a gluten-free diet immediately afterwards.  But
around November some of my symptoms started to come back, so I kept a food journal and went to my GI and had some blood work and a lactose intolerance test performed.  Those tests came back normal, and just as sudden as the symptoms came on-they left.  Now they are back, and it doesn’t matter what I eat: a banana, gluten-free dinner that is home made, yogurt, etc. I am miserable! My GI said that if that happened that she would do another endoscopy to see what is going on.  Is there anything else I should be thinking of?  I heard that leaky gut happens, or sensitivity to other foods..... I am kind of at a loss here.



 

dilettantesteph Collaborator
dilettantesteph
Posted

So I am new to this community, so if I babble or write on the wrong blog-please chalk it up to that  :)

 I was diagnosed last April (after years of symptoms and dumb doctors) and went on a gluten-free diet immediately afterwards.  But

around November some of my symptoms started to come back, so I kept a food journal and went to my GI and had some blood work and a lactose intolerance test performed.  Those tests came back normal, and just as sudden as the symptoms came on-they left.  Now they are back, and it doesn’t matter what I eat: a banana, gluten-free dinner that is home made, yogurt, etc. I am miserable! My GI said that if that happened that she would do another endoscopy to see what is going on.  Is there anything else I should be thinking of?  I heard that leaky gut happens, or sensitivity to other foods..... I am kind of at a loss here.

 

Have a look at your food/symptom journal.  Keep in mind that the offending food could have been eaten the day before or even two days before.  I try not to make more than one change a week because I have found that it can take that long to notice a reaction.

 

When you are having problems and don't know why, it can help to limit you diet to produce and unprocessed meats.  If you keep it down to not very many foods, it is easier to figure out what food might be bothering you.

 

I hope you feel better soon.

Archived

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

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


  • Member Statistics

    • Total Members
      131,548
    • Most Online (within 30 mins)
      7,748
    Lunaluv
    Newest Member
    Lunaluv
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Who's Online (See full list)

  • 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.