Sorry if long- new to this

[Jctb]

Hello! I apologize in advance if this is long and a bit detailed, but I'm feeling very anxious, and have so many questions.

I'm a 36 year old woman. I've had lots of digestive issues over the last few years. Nothing overly bad, but definitely unpredictable, comes and goes. I deal with anxiety, and have dark circles. There have also been times where my iron, b12, or vot has been on the low side. 

In November I started having pain on my lower left side. I made a Dr appt (my Dr. is not great, but its very difficult to find another here). She asked me a bunch of questions...when I told her I had diarrhea she said maybe I was taking too much magnesium. She ordered some blood work and an ultrasound of the area. Things came back normal. I was also having this full feeling, like I had to poop and it was stuck, sometimes also the typical feeling of being full in my stomach. But I was usually pooping every day (sometimes just a little). I would also get some random hives. Just one or two, and they would go away pretty quick.

I decided to see a naturopath, and eliminated all grains for 5 weeks. I still didn't feel great (sometimes diarrhea, or that full in my bum feeling, but overall better than on grains!!!). The pain in my side went away. No hives.

I slowly started to reintroduce grains, and was generally feeling ok. I wasn't eating much gluten, not everyday. I was on holidays, so I would have a beer or two while preparing dinner (camping), but otherwise it would be every 2-3 days and a small amount (not like before!!)

About 3 weeks after going back to grains, I had a tooth infection and went on antibiotics. Still eating the same way, feeling mostly fine (mostly normal poops).

10 days after the antibiotics was finished, I had been at a party wasn't feeling great. I went to the washroom and I had apparently been constipated, as there was a lot, and it was hard and dark. Then there was some blood and mucus. The mucus continued for the next day, sometimes with a small tinge of blood. I also had a few hives again.

Of course I was very concerned. I called the pharmacist to ask if the antibiotics could have caused this. He said to see a Dr, but that yes, Clindamycin can do this. My Dr. was away, so I went to a clinic. Dr said the pharmacist was concerned about c-diff, but she didn't think that was it. She ran a bunch of bloodwork (including celiac testing and a test looking for inflammation). I had no gluten for the next couple of days.

They ended up calling saying it was fine. Assuming there was no celiac I had some bread, then the next morning a piece of my kid's cinnamon bun

Next afternoon Dr herself called to say surprisingly the celiac test had come back positive. She said it was in the grey area  [My number was 24] (under 20 negative, 20-24 indeterminate, 25 plus positive).  She did say, however, because I had only been eating gluten sparingly, for a month, that this could be why it wasn't higher.

I've been feeling pretty yuck the last few days. I have the feeling like I can't push out a bm, I've had a bit of diarrhea, I'm thirsty even though I'm drinking water, and I've been incredibly anxious and moody. I spoke to my naturopath, she said that this could all be a flare from having the gluten, especially after having been on antibiotics and all my good bacteria was wiped out. 

I don't know if I have some sort of internal hemmroid, or tear from when I had the bleeding, or if this feeling can be part of celiac (if I do have it). I am trying to get an appt with my Dr, because as of right now I don't have one until Sept 14...shes been away.

 

Does anyone have any advice or experience that may help calm me or shed some light. I'm such a mess right now, assuming I have cancer, and I'm trying to not let my mind wander. I do realize no one here can tell me anything for sure, but from what I gather this disease can do some strange things to our bodies...I've requested a few books from the library, to read up on it.

[Jmg]

1 hour ago, Jctb said:

Does anyone have any advice or experience that may help calm me or shed some light. I'm such a mess right now, assuming I have cancer, and I'm trying to not let my mind wander. I do realize no one here can tell me anything for sure, but from what I gather this disease can do some strange things to our bodies...I've requested a few books from the library, to read up on it.

Hello and welcome

You've found a great community, lot's of people have been in your position and come out the other side. So my first, probably redundant suggestion is not to worry. Difficult I know, but the odds are very much that all the horrid things you're imagining are not the cause. 

Finding out more info is a good start, but be careful of the internet, there's lots of snake oil salesmen and people making unrealistic and unfounded claims. Stick to reputable sites from organisations that aren't looking to make a buck. Here's a good place to start: Open Original Shared Link

I also collected some more links here: https://www.celiac.com/forums/topic/115138-suggestion-faq-intro-post-for-the-diagnosis-board-input-requested/?do=findComment&comment=970127

Obviously your next step is to see your doctor. Before then, stay on gluten, try and eat some every day. This is because you'll likely need another blood test or be referred for an endoscopy (a check of your intestine for celiac damage) both need you to be eating gluten for an accurate result. 

The good news is that if its celiac, or gluten sensitivity, that the cure is simply to avoid gluten and if you do so the prognosis is excellent, you could find yourself feeling better than you thought possible. The first step is to find out, so keep on gluten and keep that appointment. 

And don't worry, you're doing the right thing getting this checked out and you're still young and your body will soon recover if gluten does turn out to be a problem.

Best of luck!

Matt

 

[Jctb]

Thanks so much. I haven't  had any gluten since Thursday morning....I was trying to settle down my immune system. It's my understanding that here is can take some time to get an appointment with a GI Dr. Thankfully I was able to get an appt to see my Dr this afternoon. I needed to calm down these symptoms to try to calm my mind from assuming they are being caused by something more terrible. But if I need go keep consuming gluten I will do that. 

I appreciate the resources. I'm definitely afraid to Google much, as it can lead down a path of making me worry more.

[Celiac's Wifey]

Hi!

Sorry you are feeling rotten!

For sure Celiac & Gluten sensitivities can do very weird things to people. My husband, his sis, and their dad all have biopsy-confirmed celiac  -all three had many weird things happening to their bodies - and between the three of them they basically had zero overlapping symptoms. We are in the process of trying to figure out if it is affecting our kids now (they are little) and that has been a whole other set of considerations!

A couple things: doctors should stop be surprised by a positive celiac test. The best current research puts the global population of celiacs at 1% of the total population, of whom more than 80% are undiagnosed:

Open Original Shared Link

(There is lots of documentation of this in the med lit, but this one has a map! woohoo!). It is not as uncommon as thought twenty years ago, when my husband was diagnosed as a kid (his sis & dad were diagnosed decades later - after it had likely triggered the five other autoimmune disorders they share between them.)

This next link is to a blog -- but the person being interviewed, Dr. Fasano, is one of the leading Celiac disease experts/researchers in the U.S. It is a digestible (ha) run down because it is in interview form, and the back explanation is interesting if you are wondering how it works. (It is from 2011, but there are updated links you can follow for more). The other interviews she did with him and the site in general have lots of good info in case your symptoms turn out to be related to other foods.

Open Original Shared Link

So....trust your gut...(ha). Or rather, be suspicious of it. If you don't feel well, and have noticed a potential link to your gluten or bread consumption, then take reasonable precautions. It is really good advice to ask specifically that on follow up serology that they don't just retest your TTG-IGA level - ask for the full panel (listed at Matt's link) or at least insist that you have the DGP-IgG and DGP-IgA antibodies levels tested.

However it turns out, I hope you will find your cause and be feeling much better soon!

[Ennis-TX]

4 hours ago, Jctb said:

Hello! I apologize in advance if this is long and a bit detailed, but I'm feeling very anxious, and have so many questions.

I'm a 36 year old woman. I've had lots of digestive issues over the last few years. Nothing overly bad, but definitely unpredictable, comes and goes. I deal with anxiety, and have dark circles. There have also been times where my iron, b12, or vot has been on the low side. 

In November I started having pain on my lower left side. I made a Dr appt (my Dr. is not great, but its very difficult to find another here). She asked me a bunch of questions...when I told her I had diarrhea she said maybe I was taking too much magnesium. She ordered some blood work and an ultrasound of the area. Things came back normal. I was also having this full feeling, like I had to poop and it was stuck, sometimes also the typical feeling of being full in my stomach. But I was usually pooping every day (sometimes just a little). I would also get some random hives. Just one or two, and they would go away pretty quick.

I decided to see a naturopath, and eliminated all grains for 5 weeks. I still didn't feel great (sometimes diarrhea, or that full in my bum feeling, but overall better than on grains!!!). The pain in my side went away. No hives.

I slowly started to reintroduce grains, and was generally feeling ok. I wasn't eating much gluten, not everyday. I was on holidays, so I would have a beer or two while preparing dinner (camping), but otherwise it would be every 2-3 days and a small amount (not like before!!)

About 3 weeks after going back to grains, I had a tooth infection and went on antibiotics. Still eating the same way, feeling mostly fine (mostly normal poops).

10 days after the antibiotics was finished, I had been at a party wasn't feeling great. I went to the washroom and I had apparently been constipated, as there was a lot, and it was hard and dark. Then there was some blood and mucus. The mucus continued for the next day, sometimes with a small tinge of blood. I also had a few hives again.

Of course I was very concerned. I called the pharmacist to ask if the antibiotics could have caused this. He said to see a Dr, but that yes, Clindamycin can do this. My Dr. was away, so I went to a clinic. Dr said the pharmacist was concerned about c-diff, but she didn't think that was it. She ran a bunch of bloodwork (including celiac testing and a test looking for inflammation). I had no gluten for the next couple of days.

They ended up calling saying it was fine. Assuming there was no celiac I had some bread, then the next morning a piece of my kid's cinnamon bun

Next afternoon Dr herself called to say surprisingly the celiac test had come back positive. She said it was in the grey area  [My number was 24] (under 20 negative, 20-24 indeterminate, 25 plus positive).  She did say, however, because I had only been eating gluten sparingly, for a month, that this could be why it wasn't higher.

I've been feeling pretty yuck the last few days. I have the feeling like I can't push out a bm, I've had a bit of diarrhea, I'm thirsty even though I'm drinking water, and I've been incredibly anxious and moody. I spoke to my naturopath, she said that this could all be a flare from having the gluten, especially after having been on antibiotics and all my good bacteria was wiped out. 

I don't know if I have some sort of internal hemmroid, or tear from when I had the bleeding, or if this feeling can be part of celiac (if I do have it). I am trying to get an appt with my Dr, because as of right now I don't have one until Sept 14...shes been away.

 

Does anyone have any advice or experience that may help calm me or shed some light. I'm such a mess right now, assuming I have cancer, and I'm trying to not let my mind wander. I do realize no one here can tell me anything for sure, but from what I gather this disease can do some strange things to our bodies...I've requested a few books from the library, to read up on it.

The blood and mucus in the stool and tired are issues I had even on a gluten free diet for years. I seemed to have developed a second AI issues called Ulcerative Colitis. You might ask your doctor about and they check for it with a colonoscopy as it is in the large intestine normally. It is treated much the same as Celiac diet wise but had other triggers in addition. Common triggers for it are gluten, dairy, soy, and in some cases like mine fructose, glucose, and other sugars. Basically you treat it by removing all grains, fruit, sugars, dairy, and gluten....sounds bad at first but consider this....imagine a diet where you are required to eat nothing but fats and protein...you know meats, eggs, veggies, nuts, seeds, etc.  I been on it since Feb with the ketogenic/Paleo, the blood stopped the mucus stopped, still backed up sometimes but I have a lot more energy and sure beats my worst fears for seeing that blood....but you could be lucky and just have hemorrhoids or a tear from the constipation.

FEW tips 1. A lot of celiacs have a magnesium deficiency, this shows in all kind of ways, anxiety, constipation mainly, but other issues are muscle cramps, weakness in your muscles, and in extreme cases a pin and needle prickly sensation, skin fire sensations, or numbness. Supplementation with theses there are 2 products I would suggest, even rotating them if you have to. Doctors best Magnesium, and Natural Vitality Calm. The Calm is a citrate, very easy to absorb and you mix it in drink, issue is you have to start off with very small doses like 1/4 tsp and slowly work your way up to the full dose sometime less or more. You know it is working when you can use the bathroom easy after taking it. You have to ease into it or can give you the D.   Doctors best is also available in a powder you dissolve in a beverage, bit off taste, but is easy on the stomach, it will not help much with constipation like the Calm but will with the other issues.

2. B-vitamins the whole spread of them and some other nutrients are a issue with absorption, I use liquid Health Stress & Energy for this and the same brand Neurological support 1 tbsp each 3 times a day. Just mix it in a beverage. Simple easy no pills and very easy for your body to adsorb due to the form.

Helpful links
https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

[Jctb]

21 minutes ago, Ennis_TX said:

The blood and mucus in the stool and tired are issues I had even on a gluten free diet for years. I seemed to have developed a second AI issues called Ulcerative Colitis. You might ask your doctor about and they check for it with a colonoscopy as it is in the large intestine normally. It is treated much the same as Celiac diet wise but had other triggers in addition. Common triggers for it are gluten, dairy, soy, and in some cases like mine fructose, glucose, and other sugars. Basically you treat it by removing all grains, fruit, sugars, dairy, and gluten....sounds bad at first but consider this....imagine a diet where you are required to eat nothing but fats and protein...you know meats, eggs, veggies, nuts, seeds, etc.  I been on it since Feb with the ketogenic/Paleo, the blood stopped the mucus stopped, still backed up sometimes but I have a lot more energy and sure beats my worst fears for seeing that blood....but you could be lucky and just have hemorrhoids or a tear from the constipation.

FEW tips 1. A lot of celiacs have a magnesium deficiency, this shows in all kind of ways, anxiety, constipation mainly, but other issues are muscle cramps, weakness in your muscles, and in extreme cases a pin and needle prickly sensation, skin fire sensations, or numbness. Supplementation with theses there are 2 products I would suggest, even rotating them if you have to. Doctors best Magnesium, and Natural Vitality Calm. The Calm is a citrate, very easy to absorb and you mix it in drink, issue is you have to start off with very small doses like 1/4 tsp and slowly work your way up to the full dose sometime less or more. You know it is working when you can use the bathroom easy after taking it. You have to ease into it or can give you the D.   Doctors best is also available in a powder you dissolve in a beverage, bit off taste, but is easy on the stomach, it will not help much with constipation like the Calm but will with the other issues.

2. B-vitamins the whole spread of them and some other nutrients are a issue with absorption, I use liquid Health Stress & Energy for this and the same brand Neurological support 1 tbsp each 3 times a day. Just mix it in a beverage. Simple easy no pills and very easy for your body to adsorb due to the form.

Helpful links
https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

Thanks so much. It def freaked me out! I do take magnesium, but hadn't been regularly in the last month. Basically we've been camping/on holiday since mid-July, so not in our regular routine

I've done a candida diet before, and am ok with restrictions. The biggest issue is that I haven't eaten meat in over 20 years, so while I eat fish and eggs, it can be trickier. I'm hoping my Dr. will listen this afternoon. I never know how she will be.

[Jctb]

2 hours ago, Celiac's Wifey said:

Hi!

Sorry you are feeling rotten!

For sure Celiac & Gluten sensitivities can do very weird things to people. My husband, his sis, and their dad all have biopsy-confirmed celiac  -all three had many weird things happening to their bodies - and between the three of them they basically had zero overlapping symptoms. We are in the process of trying to figure out if it is affecting our kids now (they are little) and that has been a whole other set of considerations!

A couple things: doctors should stop be surprised by a positive celiac test. The best current research puts the global population of celiacs at 1% of the total population, of whom more than 80% are undiagnosed:

Open Original Shared Link

(There is lots of documentation of this in the med lit, but this one has a map! woohoo!). It is not as uncommon as thought twenty years ago, when my husband was diagnosed as a kid (his sis & dad were diagnosed decades later - after it had likely triggered the five other autoimmune disorders they share between them.)

This next link is to a blog -- but the person being interviewed, Dr. Fasano, is one of the leading Celiac disease experts/researchers in the U.S. It is a digestible (ha) run down because it is in interview form, and the back explanation is interesting if you are wondering how it works. (It is from 2011, but there are updated links you can follow for more). The other interviews she did with him and the site in general have lots of good info in case your symptoms turn out to be related to other foods.

Open Original Shared Link

So....trust your gut...(ha). Or rather, be suspicious of it. If you don't feel well, and have noticed a potential link to your gluten or bread consumption, then take reasonable precautions. It is really good advice to ask specifically that on follow up serology that they don't just retest your TTG-IGA level - ask for the full panel (listed at Matt's link) or at least insist that you have the DGP-IgG and DGP-IgA antibodies levels tested.

However it turns out, I hope you will find your cause and be feeling much better soon!

Thanks so much. I have three kids, and my oldest has recently been tested for thyroid issues (at my request). It's slightly off, so they keep following up 6 months later to see if there are changes. I'm now going to ask about adding a celiac test...he's got some symptoms, so I think it's worth it. I may also ask about my other two, as there are also issues there as well.

[Ennis-TX]

3 minutes ago, Jctb said:

Thanks so much. It def freaked me out! I do take magnesium, but hadn't been regularly in the last month. Basically we've been camping/on holiday since mid-July, so not in our regular routine

I've done a candida diet before, and am ok with restrictions. The biggest issue is that I haven't eaten meat in over 20 years, so while I eat fish and eggs, it can be trickier. I'm hoping my Dr. will listen this afternoon. I never know how she will be.

Perfectly fine lol, I do not eat meat either, I can not digest it lol, I live on egg whites, vegan protein powders, nuts, seed, and veggies...basically omelettes, stir fry, soups, and nut based breads, I make a lot of them myself and you can find them here in the recipe section for now. I also have nut based porridge, no carb noodles and rice from maricale noodles and cauliflower pizza in moderation.

[Jmg]

18 minutes ago, Jctb said:

I'm hoping my Dr. will listen this afternoon. I never know how she will be.

Make some concise notes in bullet point form to make sure you cover what you need to. You have a strong case for further investigation so if your doctor is reluctant don't be afraid to be assertive in looking for answers.

[Celiac's Wifey]

2 hours ago, Jctb said:

Thanks so much. I have three kids, and my oldest has recently been tested for thyroid issues (at my request). It's slightly off, so they keep following up 6 months later to see if there are changes. I'm now going to ask about adding a celiac test...he's got some symptoms, so I think it's worth it. I may also ask about my other two, as there are also issues there as well.

Hey - autoimmune thyroid and celiac disease are besties as far as I can tell. Hashimoto's Thyroiditis (hypothyroid) was one of the first 'findable' problems for my sis-in-law (she had plenty of inconsistent GI symptoms, and unexplained infertility, but she was in the tiny percent of sero-negative celiacs, where multiple blood tests over multiple years didn't find it. When they finally did the endoscopy she had Marsh 3 lesions everywhere they could see even without biopsy (they did the biopsies anyway).

I was also reading a lot of the diagnostic guidelines lately, and the European guidelines are very clear that a high degree of clinical suspicion is appropriate. In other words, do all the screening you can, if possible, because if that is what it is and you catch it 'early' you are so much better off than catching it late, after lots of other potential complications cropped up....

Good luck at the doc -- oh -- and if possible ask for paper copies of all the med labs that are run for you and your kids. It is a really good idea to have them all to refer back to if more questions crop up or if you want to double check the labs for any reason  (learned this the hard way!)

[Jctb]

54 minutes ago, Celiac's Wifey said:

Hey - autoimmune thyroid and celiac disease are besties as far as I can tell. Hashimoto's Thyroiditis (hypothyroid) was one of the first 'findable' problems for my sis-in-law (she had plenty of inconsistent GI symptoms, and unexplained infertility, but she was in the tiny percent of sero-negative celiacs, where multiple blood tests over multiple years didn't find it. When they finally did the endoscopy she had Marsh 3 lesions everywhere they could see even without biopsy (they did the biopsies anyway).

I was also reading a lot of the diagnostic guidelines lately, and the European guidelines are very clear that a high degree of clinical suspicion is appropriate. In other words, do all the screening you can, if possible, because if that is what it is and you catch it 'early' you are so much better off than catching it late, after lots of other potential complications cropped up....

Good luck at the doc -- oh -- and if possible ask for paper copies of all the med labs that are run for you and your kids. It is a really good idea to have them all to refer back to if more questions crop up or if you want to double check the labs for any reason  (learned this the hard way!)

My Dr. also said that about thyroid!

 

The appt went well. She is sending me for endoscopy and colonoscopy. She said to eat gluten one week before, which according to everything else, is not correct. My concern now is this- I didn't eat much anyhow, but I can't imagine eating 4 pieces of bread a day for 3 months. I'd eat half that when I was eating gluten. Ugh. This isn't going to be fun

[squirmingitch]

OH honey, you don't have to eat 4 slices of bread per day for 3 months. That is overkill! 1/2 slice of bread per day will do. See:

Open Original Shared Link

Many find it helpful to eat that just before bed so that the worst effects (hopefully) take place while you're sleeping.

If you or any of your kids turn up positive & it surely looks like you will, then all first degree relatives should be tested every 2 or 3 years in the absence of symptoms & immediately if symptoms present. Once one of you has a dx of celiac then it will be much easier to get everyone else tested. 

[Jctb]

24 minutes ago, squirmingitch said:

OH honey, you don't have to eat 4 slices of bread per day for 3 months. That is overkill! 1/2 slice of bread per day will do. See:

Open Original Shared Link

Many find it helpful to eat that just before bed so that the worst effects (hopefully) take place while you're sleeping.

If you or any of your kids turn up positive & it surely looks like you will, then all first degree relatives should be tested every 2 or 3 years in the absence of symptoms & immediately if symptoms present. Once one of you has a dx of celiac then it will be much easier to get everyone else tested. 

Ok that's wonderful to know. I had read that on Celiac Canada's website (I think). I'll do it at night...although one of the things that used to happen to me was waking up with this panic/ominous feeling at night. 

I've told my Mom she should be tested. She's been dealing with food issues for years. Mostly controlled with diet, and not noticeably wheat, but still...she also has thyroid issues. 

I am so appreciative of everyone's help and advice.

[squirmingitch]

Hey, everyone is different, so if eating it before bed interferes with your sleep too much, then you might want to eat it during the day. Do whatever helps you get through it easiest. 

It's a great idea for your mom to get tested!