celiac disease Symptoms Coming Back

[shorebird]

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.

[pricklypear1971]

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]

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]

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]

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]

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]

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.

[shorebird]

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]

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]

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]

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]

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]

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]

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.