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Worried Yet Cannot Help.


Niebr

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Niebr Collaborator

Alright, I know possibly no one here is a medical doctor or able to give medical advice, i am just really worried because this is an ongoing problem, and I cannot be racking up anymore bills with hospitals.

I would like to post some logs ive been keeping for the past month and get an idea of what nmy problem maybe,

but to be recent,

I have been having problems with constipation for 3 weeks now, I have been doing stool softeners and natural ways to evacuate bowels, but i cannot keep any regularity, now either yesterday or 2 days ago, i had a sharp pain in the upper abdomen. it lasted 1 second, but it was sharp and caught my attention, and im now worried, the one that happened this morning was sharp, lasted a second went away as fast as it came, but it was sharp and caught my attention, but what i noticed it was after i ate 2 sausage patties, so im wondering if it maybe something related to greasy foods ? or maybe the glass of milk last night ?


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IrishHeart Veteran

Alright, I know possibly no one here is a medical doctor or able to give medical advice, i am just really worried because this is an ongoing problem, and I cannot be racking up anymore bills with hospitals.

I would like to post some logs ive been keeping for the past month and get an idea of what nmy problem maybe,

but to be recent,

I have been having problems with constipation for 3 weeks now, I have been doing stool softeners and natural ways to evacuate bowels, but i cannot keep any regularity, now either yesterday or 2 days ago, i had a sharp pain in the upper abdomen. it lasted 1 second, but it was sharp and caught my attention, and im now worried, the one that happened this morning was sharp, lasted a second went away as fast as it came, but it was sharp and caught my attention, but what i noticed it was after i ate 2 sausage patties, so im wondering if it maybe something related to greasy foods ? or maybe the glass of milk last night ?

There is a member who is a doctor on site here, maybe she will see your post. But my hunch is she will just be guessing, too because there are many variables and it's too hard to say why you are having these symptoms right now.

As I do not know how long you have been gluten-free, what you eat on a regular basis, or if you have secondary lactose intolerance, I am merely taking a guess here. Often, lactose is a problem for newly DXed celiacs and if you have just reintroduced dairy, you may be having trouble digesting it. I feel for you because I have been there/done that with doctors, hospitals, tests and racking up thousands in medical bills over the years with NO answers (before my DX)

Many foods can cause constipation--so can hypothyroidism and other conditions--so it is pointless to speculate as to why you have sudden onset constipation and cramping--there are just too many variables. Sorry, but that's the truth. Do you often eat sausages? fried foods? do they give you trouble? see what I mean?

One thing that helped regulate me--after MANY years of GERD, alternating D and C, and horrible cramping pain---was using Probiotics. And drinking lots of water. The one suggestion that many people--doctors or otherwise ---will give you is: HYDRATE. Water is what moves bowels, not necessarily throwing down fiber on top of fiber. Without water, the fiber will just bulk up and sit there in the intestines....trust me, I learned all this the hard way. And unfortunately, I know more about bowel movements and the intestinal tract than I ever wanted to know. I mean, honestly--who really wants to be an expert on poo?? :rolleyes: But, we do what we have to do to feel better. :)

A few months on probiotics and digestive enzymes (and of course, being gluten-free and DF) and my GI tract responded and is now "normal" for the first time in my life. No need for any supplements/softeners/anti-diarrheals or laxatives of any kind to treat my symptoms. Occasionally, I still experience C and it is always when I have tried too much Lactose---as I am trying to reintroduce cheese into my diet and my system just is not ready for it. Those villi take a while to regrow and that is where Lactase is produced.

Again, this is just a thought ---as many variables could be at play--- and you do not say where you are at in the healing stage. Ok, That will be a $20 co-pay please...(just kidding) ;)

Hope this helps. Best wishes to you!

AzizaRivers Apprentice

IrishHeart has given good information, so I'll just add one more thing.

This is just a thought I had as no one can tell much from what you've posted, but where exactly was the pain? Gallbladder pain can often be sharp like that, and is also often exacerbated by greasy foods. Your gallbladder is in your upper right quadrant. You would feel that pain in your right side, about 2 inches up inside of your ribs.

I don't know your history or whether you've been diagnosed with celiac or not, but gluten in celiacs can cause gallbladder issues, as can many other foods for us, as we tend to have sensitive digestive systems and often develop other issues even when gluten free. If that's the location of your pain, you might want to mention it to your doctor so that he or she can get you checked out.

IrishHeart Veteran

Good point AZIZA!!....I had gallbladder disease in my 20s, and had it removed... long before my celiac DX

But again, we can only guess. I always experienced SHARP pain that doubled me over, made me sweat and nearly pass out when I was very ill before DX ....(whew, glad that nightmare is behind me!) so, it could just be a temporary thing.

Niebr Collaborator

Actually just got back from the hospital and they said that it wasnt to be concenred about. They took like 4 X-rays. 2 standing 2 laying down.

as for the pain, it was directly below where the rib cages meet in the middle, but it felt like both sides, it happens so fast and leaves so fast, i cant really be sure, its like a 4-5 pain scale, and its gone as fast as it comes, literally a second,

And I have been celiac disease for like 8 months now, so for lactose to be a problem i am going to be angry because I had no problem with lactose even at 1 month after diagnose, and ive been eating cereal before all the constipation started, til it started thn i stopped n strictly started trying to make this all stop,

Niebr Collaborator

Well, next morning, im sitting here dealing with slight waves of nausea and just overall crappy feeling, i was sent home yesterday with papers on constipation and how to get medical insurance.

But what bugs me is I cant seem to shake just about any problem I'm having right now, and me having anxiety problems doesn't help AT ALL.

I'm honestly getting to the point where i just want to cry every time something goes wrong because it seems like I've been on a digestive roller coaster since CS started.

Im taking probiotics now, 1 daily. lots of water 2-4 20oz bottles daily.

but other than that i really don't even want to eat anymore because every time I do, I feel horrible. I feel like its celiacs all over again. but I'm not eating anything that could cause it, I'm certain I'm not.

jswog Contributor

lots of water 2-4 20oz bottles daily.

Honestly, that doesn't sound like 'lots' of water to me. The general recommendation that has been around for YEARS is at least 8 8oz glasses per day of water, which comes to 64 oz, which would be just over 3 of your 20 oz bottles, so 2-4 may well not be adequate hydration even on that scale. That being said, I've also seen the following recommendation many places: Take your weight in pounds, divide by 2. The number you get is your minimum ounces of water you should be drinking per day. So, to use round numbers, say you weigh 200#. Divide 200 by 2 and you should be drinking at least 100oz of water each day.

HTH!


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Niebr Collaborator

Honestly, that doesn't sound like 'lots' of water to me. The general recommendation that has been around for YEARS is at least 8 8oz glasses per day of water, which comes to 64 oz, which would be just over 3 of your 20 oz bottles, so 2-4 may well not be adequate hydration even on that scale. That being said, I've also seen the following recommendation many places: Take your weight in pounds, divide by 2. The number you get is your minimum ounces of water you should be drinking per day. So, to use round numbers, say you weigh 200#. Divide 200 by 2 and you should be drinking at least 100oz of water each day.

HTH!

I always thought that was a good amount o.0

ok so then by that standrds, i should be drinking at least 60oz a day, so im drinking enough daily.

jswog Contributor

I always thought that was a good amount o.0

ok so then by that standrds, i should be drinking at least 60oz a day, so im drinking enough daily.

Though more is always better, especially as you detox from gluten. Drinking about double the minimum amount of water each day was the only thing that seemed to help much at all with my detox symptoms (some of the worst headaches of my life, sleepyness with insomnia, etc.).

Jen

Niebr Collaborator

Though more is always better, especially as you detox from gluten. Drinking about double the minimum amount of water each day was the only thing that seemed to help much at all with my detox symptoms (some of the worst headaches of my life, sleepyness with insomnia, etc.).

Jen

Well I am lucky enough to know what not to eat so soon, now if i could just deal with the ongoing constipation, ill be happy ^.^ ive been doing miralax for a while, but it just helps me og as soon as i stop, so does my regularity,

  • 2 weeks later...
pondy Contributor

Hi,

Constipation is a huge issue for me also... so I get what you are going through.

I had a colonoscopy a month or two ago to rule out a fecal impaction - it was all clear but

my GI put me on Miralax 2 to 3 times per day - like maybe till whenever my intestines heal up - could be years.

Point is, my GI told me that Miralax is totally mild and totally safe! Like you, I can't "pass"

anything easily without it. So be it, it works.

I also have gotten exactly the same pains that you have described... it happens

willy nilly like & it's a mystery to the doctors.

I also have an anxiety issue & take meds that can cause C.

What works for me:

Miralax, water, mild exercise, and trying not to obsess about it (I tend to do this).

All best to you... feel free to message me for more info!

Niebr Collaborator

Hi,

Constipation is a huge issue for me also... so I get what you are going through.

I had a colonoscopy a month or two ago to rule out a fecal impaction - it was all clear but

my GI put me on Miralax 2 to 3 times per day - like maybe till whenever my intestines heal up - could be years.

Point is, my GI told me that Miralax is totally mild and totally safe! Like you, I can't "pass"

anything easily without it. So be it, it works.

I also have gotten exactly the same pains that you have described... it happens

willy nilly like & it's a mystery to the doctors.

I also have an anxiety issue & take meds that can cause C.

What works for me:

Miralax, water, mild exercise, and trying not to obsess about it (I tend to do this).

All best to you... feel free to message me for more info!

ive been doing the generic form for a few weeks now, but im goign to stop down to a gastro doc n hope i can at least get a consultation on that til my appointment, thank you!

pondy Contributor

ive been doing the generic form for a few weeks now, but im goign to stop down to a gastro doc n hope i can at least get a consultation on that til my appointment, thank you!

I'm glad you're going to see a GI.

He will probably ask you if you have bloating, nausea and/or vomiting. They asked me that 100's of times - I believe it's a symptom of a blockage or impaction.

Are you taking a fiber supplement? I ask because - from personal experience - I would NOT recommend it for someone with chronic constipation. Here's why: think about it, do you really want to bulk up your stool when it's already stuck in the colon? If you get enough fiber in your natural diet, that should be good enough. MiraLax is a medicine that draws water into your colon to soften things up so that they can pass. For me, I refuse to use anything like Benefiber because I don't want to make an even larger mass of stool if I can't pass the amount that's already there.

Hope that makes sense - that's just my logic. I'm NO professional - just a person who has dealt with this issue for years!

Niebr Collaborator

I'm glad you're going to see a GI.

He will probably ask you if you have bloating, nausea and/or vomiting. They asked me that 100's of times - I believe it's a symptom of a blockage or impaction.

Are you taking a fiber supplement? I ask because - from personal experience - I would NOT recommend it for someone with chronic constipation. Here's why: think about it, do you really want to bulk up your stool when it's already stuck in the colon? If you get enough fiber in your natural diet, that should be good enough. MiraLax is a medicine that draws water into your colon to soften things up so that they can pass. For me, I refuse to use anything like Benefiber because I don't want to make an even larger mass of stool if I can't pass the amount that's already there.

Hope that makes sense - that's just my logic. I'm NO professional - just a person who has dealt with this issue for years!

actually no, i eat what i can, the only mass of fiber i had recently that possibly caused this was half a loaf of UDIS gluten-free bread in one night, (first time I had bread in 8 months) other than that all my fiber is natural from vegetables, which is usually potatoes, rice, eggs, hamburger patties) and anything else i can, i havent bothered with dairy in like a month cause of this, no fiber supplements, i am doing probiotics and daily polyethalene glycol 3350 daily, but i think it was the half loaf of udis bread in one night is wat caused the recent block,

cap6 Enthusiast

I'm glad you're going to see a GI.

He will probably ask you if you have bloating, nausea and/or vomiting. They asked me that 100's of times - I believe it's a symptom of a blockage or impaction.

Are you taking a fiber supplement? I ask because - from personal experience - I would NOT recommend it for someone with chronic constipation. Here's why: think about it, do you really want to bulk up your stool when it's already stuck in the colon? If you get enough fiber in your natural diet, that should be good enough. MiraLax is a medicine that draws water into your colon to soften things up so that they can pass. For me, I refuse to use anything like Benefiber because I don't want to make an even larger mass of stool if I can't pass the amount that's already there.

Hope that makes sense - that's just my logic. I'm NO professional - just a person who has dealt with this issue for years!

would you consider metamucil too much? I have had a problem with chronic C for 18 months now, ever since I went gluten-free. Have had it on and off all of my life but now it is unrelenting. I drink 64+ oz of water, take probiotics, fresh oj, walk daily, little to no processed foods. The only thing that helps is to drink a herbal laxative tea every other night. I guess it is some better as up to 5 months ago I was taking ducalax every other night and now I take it once a month is all. I am at a loss as to what else to do. The dr isn't happy with my taking anything but said it was better than getting a blockage. I understand Neibr. It is so frustrating! :(

pondy Contributor

would you consider metamucil too much? I have had a problem with chronic C for 18 months now, ever since I went gluten-free. Have had it on and off all of my life but now it is unrelenting. I drink 64+ oz of water, take probiotics, fresh oj, walk daily, little to no processed foods. The only thing that helps is to drink a herbal laxative tea every other night. I guess it is some better as up to 5 months ago I was taking ducalax every other night and now I take it once a month is all. I am at a loss as to what else to do. The dr isn't happy with my taking anything but said it was better than getting a blockage. I understand Neibr. It is so frustrating! :(

Sounds like you are doing all the right things...

My GI told me to stick with whatever works, which for me is polyethylene glycol (MiraLax)daily. I wish I could drink the herbal lax tea I have in the house - but it's Yogi brand, which is not necessarily gluten free.

Metamucil? It's another fiber supplement like Benefiber but it has psyllium fiber instead of wheat dextrin fiber (got that from their website). I would not use either in my case - chronic C/slow transit - because like you, I get enough fiber naturally from whole unprocessed foods.

The thing with chronic C is this - once the colon is full of stool, simple remedies won't cut it. Believe me, I ended up having to drink a gallon of colonoscopy prep just to flush it out... not a fun experience.

Better to stay regimented with whatever works for you. Like you said, it's better to be proactive with the issue than to end up with a blockage!

Niebr Collaborator

Sounds like you are doing all the right things...

My GI told me to stick with whatever works, which for me is polyethylene glycol (MiraLax)daily. I wish I could drink the herbal lax tea I have in the house - but it's Yogi brand, which is not necessarily gluten free.

Metamucil? It's another fiber supplement like Benefiber but it has psyllium fiber instead of wheat dextrin fiber (got that from their website). I would not use either in my case - chronic C/slow transit - because like you, I get enough fiber naturally from whole unprocessed foods.

The thing with chronic C is this - once the colon is full of stool, simple remedies won't cut it. Believe me, I ended up having to drink a gallon of colonoscopy prep just to flush it out... not a fun experience.

Better to stay regimented with whatever works for you. Like you said, it's better to be proactive with the issue than to end up with a blockage!

agreed, i think ima have to do that flush to get everything back to normal,

and just stick with the PG 3350 at least til my GI appointment,

cap6 Enthusiast

Sounds like you are doing all the right things...

My GI told me to stick with whatever works, which for me is polyethylene glycol (MiraLax)daily. I wish I could drink the herbal lax tea I have in the house - but it's Yogi brand, which is not necessarily gluten free.

Metamucil? It's another fiber supplement like Benefiber but it has psyllium fiber instead of wheat dextrin fiber (got that from their website). I would not use either in my case - chronic C/slow transit - because like you, I get enough fiber naturally from whole unprocessed foods.

The thing with chronic C is this - once the colon is full of stool, simple remedies won't cut it. Believe me, I ended up having to drink a gallon of colonoscopy prep just to flush it out... not a fun experience.

Better to stay regimented with whatever works for you. Like you said, it's better to be proactive with the issue than to end up with a blockage!

thank you for your feedback. I have been doing the metamucil 2x's a day but will cut back. sigh. So frustrating. Everything is so slow. My SIL (who doesn't have celiac) had a colan blockage and ended with a bag. She has since been able to have that reversed but I have a horror of ending up with a bag!

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      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins.  I got a lot of aches and pains when I got off gluten.  I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum.  Limiting one's diet too much and not getting enough vitamins, can make someone feel worse.  A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties.  I try to replace all my foods with homemade options.  Then I know the quality of the ingredients and which vitamins I may be high or low in.  Probiotics or prebiotics can help with bathroom issues.  Better to get them in foods if possible and not pill form.  My doctors keep recommending magnesium too.  It's not supposed to be taken alone, but they don't seem to care about that.  It's easy for vitamin D to be low too.  That was another thing doctors told me to take.  Unfortunately, they didn't monitor it and it went too high.  Again, better from natural sources like food and sunlight.  However, supplementing can help if you're not getting enough.  Some sources say to take D with K2.  You may want to have iodine levels checked.  If you add iodine, make sure to get sufficient selenium for thyroid.  You can get iodine naturally in most seaweed.  Nori may also be one of the few non-animal sources for B12.  Brazil nuts are a good source of selenium and you only need a few a day to meet RDA.  Some brands of nuts specifically say gluten free.  Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better.  One study said aim for at least 30 different foods in a week.  You might want to try kiwi fruit.  There were some studies that said eating kiwi improved mood.  It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods.  However, I'm afraid limiting diets like that may actually be causing more harm than good.  It's something I'm trying to work on.  I keep trying to expand the number of foods I eat and my recipe repertoire.  I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.  
    • knitty kitty
      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
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