Can You Be Celiac And Only Have Symptoms Some Of The Time?

[Krystens mummy]

Ok heres the thing. As a child I was lactose intollerant had not so good poops was a very slow feeder and did not grow. I remember being always hungry, ate fish food and craved it, but was very skinny. As a teenager I was fine.

just recently I have been getting symptoms but they only come once every two weeks or so. Do other celiacs get these symptoms only occasionally?.

I was never diagnosed as a child but my brother who is 30 is newly diagnosed my dad has just been diagnosed and I have a lot of relatives on his side that have been diagnosed in recent years.

I have had blood tests in recent weeks that were negative.

Can you have it as a child and have it go away or lay dormant and have it come beck at a later stage?

Can you have it if you eat wheat every day but only get symptoms once every two weeks or so? These symptoms last for about 5 days then go away only to return.

[Katydid]

I just had to reply to your post because it reminded me so very much of my husband's situation. Fifteen years before he was finally diagnosed with celiac, he kept complaining to doctors that it seemed like he was getting the flu every 6-8 weeks, lasting 3-5 days. He would bloat, have D, heartburn, and feel exhausted and weak and achy all over. Over the years, the gap narrowed and symptoms came more frequent until it was almost constant. He finally became very irate with his doctor and told him he didn't want to wait for the autopsy to find out what was the matter with him. That was the turning point as the doctor was taken back a bit and started ordering tests and specialists...and thus his diagnosis.

This cycling of symptoms made it very difficult for us to understand, because one day he could have pancakes and be fine, and a week or two later the same pancakes would make him sick. So he is proof positive that, yes, symptoms can come and go.

To answer your question about symptoms occuring in youth and then going dormant, I can only add that I have personal friends in our celiac group that this very thing happened to. I also have a nephew who was actually diagnosed celiac as a youngster and then 'grew out of it', only to have it return with a vegence in his 30's.

Hope this is helpful.

[Krystens mummy]

I just had to reply to your post because it reminded me so very much of my husband's situation. Fifteen years before he was finally diagnosed with celiac, he kept complaining to doctors that it seemed like he was getting the flu every 6-8 weeks, lasting 3-5 days. He would bloat, have D, heartburn, and feel exhausted and weak and achy all over. Over the years, the gap narrowed and symptoms came more frequent until it was almost constant. He finally became very irate with his doctor and told him he didn't want to wait for the autopsy to find out what was the matter with him. That was the turning point as the doctor was taken back a bit and started ordering tests and specialists...and thus his diagnosis.

This cycling of symptoms made it very difficult for us to understand, because one day he could have pancakes and be fine, and a week or two later the same pancakes would make him sick. So he is proof positive that, yes, symptoms can come and go.

To answer your question about symptoms occuring in youth and then going dormant, I can only add that I have personal friends in our celiac group that this very thing happened to. I also have a nephew who was actually diagnosed celiac as a youngster and then 'grew out of it', only to have it return with a vegence in his 30's.

Hope this is helpful.

Oh my goodness YES it was very helpfull! These symptoms that your husband gets are the very same as mine! I also sometimes have what feels like kidney pain as well but it might be referred pain from the bowel the symptoms come and go every two weeks or so. My eldest brother is as we speak being tested as he started having these symptoms three years ago and they came back less frequently as mine every six to eight weeks like your husband! celiac is quite prevalent in my family(only a recent discovery) and my 16 month old daughter is yet to be tested but is very gluten sensitive. The slightest bite will make her sick for a week

[wilem008]

This sounds a lot like me!

I havent been diagnosed with celiac yet but the more research I do, the more im convinced that thats whats wrong with me! (ive been fighting with my doctor to get tested and am getting a second opinion this week!)

Ive always had problems with constipation and lactose but over the last few year my symptoms have been getting worse...constant constipation, (odd few days of D), stomach aches after I eat, fatigue, headaches, aches in my joints, nausea, anxiety and depression....but ive noticed that it comes and goes...I'll feel ok for a week or so (even when I feel ok, Im still constipated!) then have two weeks of feeling awful then a week of feeling ok. My symptom totally come and go and its so frustrating not knowing how i'll feel one week to the next!

I cant wait for my appointment!

Good luck! I know how you feel!

[AJJ]

Hi,

I have found your post so interesting because I think what you have described has happened to me. As a child I was very unwell. My mum kept taking me to the pediatrician and even to this day says that something was wrong but they weren't able to determine the cause. I failed to thrive in that I was extremely underweight, I had drop attacks (which were put down to hypoglycaemia) and I had a lot of tummy pain (I remember calling it my "hungry pain" or my "bend over pain"). I have had a geographical tongue from the age of 2 or 3 which has continued througout my life and my teeth are badly discoloured. I apparently grew out of the drop attacks when I was about 8 or 9. But I remember having tummy pain alot but intermittently until I was about 13 years old. I am now 32. I have noticed over the years that my geographical tongue can be linked, or is made worse, by eating raw (uncooked) tomotoes - which I have learned from this website are nightshade foods. Nightshade foods contain lectin which is also found in foods that contain gluten. About 8-9 months ago I started losing weight, felt extremely fatigued and started getting a lot of headaches and many more migraines than I normally would have. I put it down to stress. Then I got really sick with nausea, some diarrhoea and vomiting over a two week period. I went to my doctor and during the examination I mentioned my weight loss. He asked if anyone in my family had a malabsorption problem. My aunt was diagnosed with Celiac disease about 2 years ago. My doctor asked if I wanted to be tested and because I felt so unwell I said yes (I really didn't have any idea what Celiac disease was). I was treated for ghiardia based on my symptoms and about two weeks later I went off to have my blood test, still feeling tired, but much better. My TTGa test came back postive. I got a referral to a gastroenterologist and had an endoscopy which came back negative. My gastroenterologist advised that I didn't need to make any changes to my diet. I have never noticed tummy symptoms except from eating tomatoes. Two weeks after my appointment to get my endoscopy results I made another appointment to ask the question whether my blood test result now could help to explain my ill health as a child. The short answer, in my doctor's opinion was no. I also asked about my dental enamel defects and geographical tongue. He didn't think there was a link, yet from my understanding from some personal research I have made (paid to subscribe to uptodate.com) would indicate that there is. My three year old son, who has a history of multiple and complex febrile convulsions, also has some enamel changes in his front top teeth (about 1mm from the bottom of each tooth). He has the faintest little rash on the top of his bottom and is often cranky which up until my positive blood test we put down to being a toddler/hungry and/or tired. He has been a slow weight gainer and sits between the 3 and 10th percentile for his weight. I have an appointment with my local doctor this coming Wednesday to talk further about having him tested for Celiac disease. So for me, I remember being often unwell up until the age of 13 and then apart from viral illnesses and being pregnant (twice) I have felt quite well up until about 8 or 9 months ago. I have also noticed that I am losing some hair and only last night experienced left sided flank pain (I get this quite often and have never really thought about it) which I noticed someone else had written about on this post. I have stopped eating uncooked tomatoes although am not gluten free (yet). My gastroenterologist's opinion was because my biopsy was negative and that I didn't have gastrointestinal symptoms (except for that two week period and when I eat tomatoes) that I don't have active disease. If I have understood him correctly, he also didn't think that people are gluten intolerant (he said that he thought people could be wheat intolerant) but not gluten intolerant. I got the feeling (and I am yet to seek a second opinion) that gluten intolerance is not medically recognized, at least by him. Funnily enough the overwhelming feeling of fatigue I had been experiencing has lifted in the past four weeks. My headaches however, haven't improved. I started a food and symptom diary in the past few days so that I can really pay attention to what my body is telling me. Would be very interested to hear if there are others with experiences like mine.