Waiting Test For Suspected Crohn's Or Celiac--Wondering About Symptoms

[Strineski]

Hi everyone! I'm so glad to have found this site. I am a 40-year-old mother of three boys. I quite suddenly started having painful, chronic diarrhea, day and night, at the end of January and have since lost 20 pounds. I went to my family dr. initially; he ran blood tests and stool samples. Blood tests showed there was some inflammation in my body, but no anemia. Stool cultures negative. He wanted to put my on Flagyl (a harsh antibiotic) anyway, but I'm breastfeeding my 6th month old and decided to see a specialist for a second opinion. I met with a GI doctor on March 31; he viewed test results, asked about my symptoms, and said it sounded like possibly Crohn's Disease or Celiac Disease; fortunately he didn't think anything sounded like cancer. He scheduled me for an endoscopy and colonoscopy on April 21. In the meantime, I've been continuing with symptoms and weight loss. Other symptoms from the beginning have included occasional low-grade fevers, 3 or 4 nights per week of severe night sweats, abdominal pain that gives me chills and sometimes can be felt in back, lower ribs, and pelvic bone area (some days I am totally free of these pains). So, I'm trying to self-diagnose. About a month ago I tried giving up gluten. Since then, I've had no obvious gluten sources like bread or cereal, but I have accidentally ingested smaller amounts at restaurants, in sauces, etc. The doctor didn't tell me to keep eating gluten, and now my tests are next week. Here's my main question. I did start having the occasional "normal" BM, I felt more energetic in the mornings, my head felt clearer, and for a while my weight stabilized. Well, I just started eating gluten again yesterday; two slices of pizza, then two pieces of toast today, etc. TOday I feel like total crap. Every inch of my body aches, my head hurts, I feel foggy, and my eyes are funky in a way that I can't describe. Almost like cloudy vision. Would this sudden change in how I feel indicate that I do indeed probably have a wheat allergy? Would I react so quickly after only two days back on wheat? I'm just very curious if any has similar symptoms to mine or how soon you react to wheat when you ingest it, either purposely or accidentally. Thanks so much!

[mushroom]

Hi everyone! I'm so glad to have found this site. I am a 40-year-old mother of three boys. I quite suddenly started having painful, chronic diarrhea, day and night, at the end of January and have since lost 20 pounds. I went to my family dr. initially; he ran blood tests and stool samples. Blood tests showed there was some inflammation in my body, but no anemia. Stool cultures negative. He wanted to put my on Flagyl (a harsh antibiotic) anyway, but I'm breastfeeding my 6th month old and decided to see a specialist for a second opinion. I met with a GI doctor on March 31; he viewed test results, asked about my symptoms, and said it sounded like possibly Crohn's Disease or Celiac Disease; fortunately he didn't think anything sounded like cancer. He scheduled me for an endoscopy and colonoscopy on April 21. In the meantime, I've been continuing with symptoms and weight loss. Other symptoms from the beginning have included occasional low-grade fevers, 3 or 4 nights per week of severe night sweats, abdominal pain that gives me chills and sometimes can be felt in back, lower ribs, and pelvic bone area (some days I am totally free of these pains). So, I'm trying to self-diagnose. About a month ago I tried giving up gluten. Since then, I've had no obvious gluten sources like bread or cereal, but I have accidentally ingested smaller amounts at restaurants, in sauces, etc. The doctor didn't tell me to keep eating gluten, and now my tests are next week. Here's my main question. I did start having the occasional "normal" BM, I felt more energetic in the mornings, my head felt clearer, and for a while my weight stabilized. Well, I just started eating gluten again yesterday; two slices of pizza, then two pieces of toast today, etc. TOday I feel like total crap. Every inch of my body aches, my head hurts, I feel foggy, and my eyes are funky in a way that I can't describe. Almost like cloudy vision. Would this sudden change in how I feel indicate that I do indeed probably have a wheat allergy? Would I react so quickly after only two days back on wheat? I'm just very curious if any has similar symptoms to mine or how soon you react to wheat when you ingest it, either purposely or accidentally. Thanks so much!

Inflammation, diarrhea, weight loss, stomach pain, body aches, foggy brain, bad reaction with reintroduction of gluten - sure sounds like it could be celiac disease. It is normal to react more severely to wheat upon its reintroduction after a gluten free period. Unfortunately, by giving up gluten for a month, considerable healing has already taken place which could mean that the endoscopy may give a false negative (if it is indeed negative) But your GI would hopefully know this. If not, you should enlighten him It is recommended that you continue eating wheat right up until all testing is finished, and if you have been gluten free, to reintroduce it for two months before testing, some would even say three, because it takes time to build up the antibodies and create the damage to the gut caused by the antibodies. If you have had symptoms for such a short period of time (in the timelines of most people on this forum, three months is a very short time between onset of symptoms and possible diagnosis), you may not yet have a lot of damage in the small intestine.

Yes, it is possible to react very quickly to wheat; for some people the reaction happens before they leave the table And it happens especially quickly upon the reintroduction of gluten. Your body is outraged at this insult

So do keep eating gluten; it might not make any difference to your testing in such a short time but you need to give yourself every chance of a positive. And do tell your GI you have been gluten free for a good while. Keep us posted on how things turn out. (I am assuming no celiac blood panel was drawn??)

[gf-soph]

It could really be either, though a big reaction to reintroducing gluten would point to celiac. Celiac can cause a huge range of symptoms, but some of your symptoms also overlap with crohn's (inflammation, diarhhea, fever, eye pain). I would say keep eating lots of gluten up until the endoscopy to give the best chance of detecting celiac if it is there.

As the other poster said, going off gluten can make it harder to detect any damage. If nothing is visible on the scopes, make sure they have done the blood tests (while you are eating gluten for a decent length of time). If there are no flattened villi and no evidence of crohn's, you may be non-celiac gluten intolerant. This can make you just as sick as celiac, but it will mean that they don't see any damage to the villi. If this is the case, get back on the gluten free diet for at least a few months. This will give you a very good idea of if gluten is your problem.

[Strineski]

Thanks so much for both of these responses. They were incredibly helpful, and I'm glad to know that these symptoms may be consistent with Celiac--I rarely find night sweats or low-grade fevers on lists of symptoms of Celiac. I have such a wide variety of symptoms that I just don't know what to think or follow. I think the weight loss is the biggest concern--I know some people go for years having symptoms without getting a diagnosis, but I was at my ideal weight to begin with and this rapid weight loss of 20 pounds in 2 1/2 months is what really prompted me to find some answers. I can't really afford to lose much more--I can't imagine going on for years this way! This is why I'm concerned that Crohn's might be more likely, but it seems odd that I'd occasionally have days with perfectly normal BMs if it was Crohn's; and I really did feel worse these last few days since re-introducing large quantities of gluten. Thank goodness I'll finally have some answers in the next week or two. Thanks again for taking time to respond!

[kel72]

Thanks so much for both of these responses. They were incredibly helpful, and I'm glad to know that these symptoms may be consistent with Celiac--I rarely find night sweats or low-grade fevers on lists of symptoms of Celiac. I have such a wide variety of symptoms that I just don't know what to think or follow. I think the weight loss is the biggest concern--I know some people go for years having symptoms without getting a diagnosis, but I was at my ideal weight to begin with and this rapid weight loss of 20 pounds in 2 1/2 months is what really prompted me to find some answers. I can't really afford to lose much more--I can't imagine going on for years this way! This is why I'm concerned that Crohn's might be more likely, but it seems odd that I'd occasionally have days with perfectly normal BMs if it was Crohn's; and I really did feel worse these last few days since re-introducing large quantities of gluten. Thank goodness I'll finally have some answers in the next week or two. Thanks again for taking time to respond!

Hi, i'm no expert on celiac as i'm having issues of my own but i do have crohns disease. Your symptoms do sound very much like my crohns symptoms BUT my sis had celiacs and they also sound like her symptoms too. It's well known that crohns sufferers often have issues with wheat and and from research i have done it would appear that the two conditions can often be confused.

[buffettbride]

Hi, i'm no expert on celiac as i'm having issues of my own but i do have crohns disease. Your symptoms do sound very much like my crohns symptoms BUT my sis had celiacs and they also sound like her symptoms too. It's well known that crohns sufferers often have issues with wheat and and from research i have done it would appear that the two conditions can often be confused.

My BFF has Crohns and she definitely gets some relief from a gluten-free diet. My daughter has Celiac and after her scope the doc said it could be Crohns or Celiac and they did a blood test to confirm it was Celiac. Honestly? After seeing what my BFF has gone through with Crohns, I'd take the Celiac.