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Help Please!

reeetz

By reeetz
in Coping with Celiac Disease

Recommended Posts

reeetz Rookie
reeetz
Posted

Hi everyone! I am new here and newly on a gluten free diet. I have not yet been diagnosed but will be seeing another doctor in the next few weeks. I have been having Celiac symptoms for a couple months after I got food poisoning. I mean horrible symptoms too! I have seen a GI doctor but he was of no help and just blew me off when I brought up Celiac saying there was not a treatment for it.

After the medicine he gave me did not help, I decided to try a gluten free diet. I have been doing the diet for about 2 weeks now and have seen a big improvement with many of my symptoms.

The question I have is this....since being gluten free, I now find myself somewhat constipated when before it was all diarrhea. Could it be all the foods that have rice? Is this normal? Have other people experienced anything like this? Do I need more fiber? Any information will be helpful since I am new at all of this.

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Erin Elberson Newbie
Erin Elberson
Posted

Hi Reetz,

I hate to say this since you are feeling better, but if you are getting retested you really should be still eating gluten. Your tests will not be accurate if you are eating gluten free.

Having said that, making sure to have plenty of vegetables can help with constipation. Eating primarily naturally gluten free foods will help you with your fiber intake-brown rice, potato, in addition to lots of green and fibrous veggies.

Take care-and get back to eating gluten!

sandsurfgirl Collaborator
sandsurfgirl
Posted

Hi Reetz,

I hate to say this since you are feeling better, but if you are getting retested you really should be still eating gluten. Your tests will not be accurate if you are eating gluten free.

Having said that, making sure to have plenty of vegetables can help with constipation. Eating primarily naturally gluten free foods will help you with your fiber intake-brown rice, potato, in addition to lots of green and fibrous veggies.

Take care-and get back to eating gluten!

The tests won't be accurate if you are on the gluten free diet, true, but the tests are not all that accurate anyway. If you don't have major damage yet they will most likely miss it. If the doctor doesn't know what he's doing he will most likely miss it, or whoever reads the test may read it inaccurately. If you don't have full blown celiac yet, but are intolerant to gluten you might feel like walking death and yet your tests will come back negative. You have to weigh all those possibilities before you go back to eating gluten and get yourself sick just so the doctor can do a biopsy.

My blood tests came back positive and the doc wanted me to eat a bunch of gluten for a biopsy. There is no way in heck I was doing that to myself. It's barbaric. I was so sick I was debilitated. I told her if she wants me to do that, then she had better be prepared to visit me in the hospital. Then I promptly switched doctors.

If you are doing so much better on the diet then it's for a reason.

You may just be healing still and that's why the C, or maybe you are eating more fiber from fruits and veggies because at first that can cause C and then it makes things regular.

sandsurfgirl Collaborator
sandsurfgirl
Posted

I wanted to add that I would not go to a GI doc who says there is "no treatment" for celiac disease. Are you kidding me? Umm, why yes Dr. Moron there IS a treatment. It's called a gluten free diet.

There are far too many GI docs with that sort of nonsense lack of knowledge out there and I was misdiagnosed by 3 of them, plus the 4 endocrinologists, two O.B.s and various other docs I've seen over the years. That sort of statement really gets my dander up. He should be reported for saying something like that. He has no business doing what he does for a living if he is that ignorant.

reeetz Rookie
reeetz
Posted
  • Author

Thank you so much for the replies. Sandsurfgirl, I completely agree with you about eating the gluten again. I have read that the tests may not come back completely right, but I just couldn't take being sick anymore. It was something that I was willing to try because nothing else was working. Well...this seems to be the one thing that has worked for me. I have felt better than I have in 2 months.

As for the doctor, I hated that guy and will not go to see him again. He also performed a colonoscopy saying that he was checking for Celiac, but as far as I have heard a colonoscopy can't diagnose this. Has anyone heard anything different? I am going to see a different doctor though that hopefully will have a brain cell and can help.

I have never been good at eating fruits and veggies but I will try to eat more for the constipation. As for eating gluten again, I don't think I can do that yet. I don't want to end up in the hospital again. Thank you again for the help.

DownWithGluten Explorer
DownWithGluten
Posted

In answer to the original question.

Reeetz...yes, yes and yes. Within the first 2-3 weeks of me going gluten free, I was very very constipated. I was like "what the hell?!" I felt like just a big cement block. It might have been over-doing it on the rice...I brought these brown rice cracker things and ate a lot of them at first...but then lightened up on them.

I'm not really sure what it was. Before I used to alternate between C and D...so I've never been regular anyway. 3 years later, I'm still probably not as 'regular' as I should be. However...that extreme constipation I got those first few weeks did eventually go away. I wish I remember how I made it go away :lol: I think I tried drinking tons of water, bought some prune juice...triphila might help too (planetary herbals is the brand I use, and thus I guess it's gluten free)...

Anyway the point is. Don't fear. I had the exact same thing happen to me when I first started, and was very frustrated. and came on here and posted a similar post (Go to my post history, early on...you'll find it lol...) Good luck. Hang in there. It'll smooth itself out at some point.

EDIT: Okay...haha...I found my thread from three years ago when I was experiencing the same thing. Maybe it can help you!

https://www.celiac.com/gluten-free/index.php?showtopic=29703&st=0&p=263358&hl=constipation&fromsearch=1&#entry263358

sandsurfgirl Collaborator
sandsurfgirl
Posted

They check for celiac with an endoscopy to take biopsies. He was at the wrong end. I think that guy needs to retire.

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Erin Elberson Newbie
Erin Elberson
Posted

They check for celiac with an endoscopy to take biopsies. He was at the wrong end. I think that guy needs to retire.

YES! Wow. Scary that he thought a colonoscopy was for celiac.

I completely understand not wanting to eat gluten. I wouldn't either.

reeetz Rookie
reeetz
Posted
  • Author

Aura, thank you for posting your old thread you had on here. It does sound exactly like what I am dealing with right now too. I have not been eating many veggies and I just started to cut out dairy as well. I just can't stand not eating dairy! I have done the prune juice thing a couple times but I just don't like it. My main concern is making sure I'm doing this diet right.

It really is amazing how my symptoms have improved so much in just 2 weeks. I have no more diarrhea, no more nausea (which was awful), no more bloating (for the most part). I'm just hoping that it is not just a coincedence and I am still really sick.

As for the doctor, yeah, that guy was a complete moron. He just didn't want to hear anything about celiac but said he would test for it during the colonoscopy. He did a biopsy but I was pretty sure it had to be of the small intestine. I should have argued but he was the doctor....what did I know? I regret that now.

kareng Grand Master
kareng
Posted

I have just gotten a positive blood test & will be having the biopsy soon. My GI is doing both an endoscopy (upper end) & a colonoscopy (far end). He is doing the colonoscopy to check for any other issues & to get to the far end of the small intestine. You can't get to the far end from the top. According to some of the medical articles I have read, if you have a new onset of Celiacs symptoms, the easiest damage to find is often (not always) in the far end of the small intestine. Hope that helps you talk to the next doctor.

Bobbijo6681 Apprentice
Bobbijo6681
Posted

I have just gotten a positive blood test & will be having the biopsy soon. My GI is doing both an endoscopy (upper end) & a colonoscopy (far end). He is doing the colonoscopy to check for any other issues & to get to the far end of the small intestine. You can't get to the far end from the top. According to some of the medical articles I have read, if you have a new onset of Celiacs symptoms, the easiest damage to find is often (not always) in the far end of the small intestine. Hope that helps you talk to the next doctor.

My doctor did the same as Karen's. He did both the endoscopy and the colonscopy. He said the colonoscopy was to check for Chrone's disease and for inflammation in my bowel's as I was having a lot of pain in my right side. He did not state that he was doing that for Celiac confirmation though, but he did do 4 biopsies, and I am unsure what all of those were for.

I also had many problems with my family doctor, long before diagnosis. I was having nerve and muscle issues but he didn't know why so he sent me to an orthopedic dr, who also couldn't find anything. He then sent me to a Neurologist for testing and he diagnosed me with a B12 deficency. I had to follow up with my family dr for treatment of that and he told me that had nothing to do with the problems that I was having. Instead of giving me answers to why I was deficient, he told me that I needed anti-depressents because "depression can cause real pain.." I refused anti-depressants and started a B12 supplement that did help to resolve some of my issues for a while, but then they came back. I went to a new doctor and she was very helpful, and although she didn't have the answers and it still took 6 months for a diagnosis, she was very attentive and listened to me, instead of making me feel like I was an idiot for being there. I have not followed up with my GI after my biopsy results, but have an appointment in a couple of weeks....I am hoping to find some competence with him as well!!

DownWithGluten Explorer
DownWithGluten
Posted

Glad I could help! The prune juice endeavor didn't last long for me either. Just, keep drinking the water and have a lot of patience...your body will come around eventually...

reeetz Rookie
reeetz
Posted
  • Author

The doctor I went to took the biopsy during the Colonoscopy also saying it was for microscopic colotis and celiac. They came back negative. But in the paper I received with the results it mentioned negative for celiac under the Endoscopy section which I know he did not do. And everything I have read said that an Endoscopy was the way to diagnose it anyways. I wish he would have just done the blood tests when I mentioned it because I was still eating gluten at that time.

He didn't even listen to my symptoms at all and said that my symptoms sounds too severe to be Celiac. Has anyone else heard that? Other people I have talked to had horrible symptoms like mine. Pale diarrhea, nausea, bloating, gas, tingling in my legs....

I am interested to hear what the other doctor I see will say, but that is not until the end of next month!

sandsurfgirl Collaborator
sandsurfgirl
Posted

The doctor I went to took the biopsy during the Colonoscopy also saying it was for microscopic colotis and celiac. They came back negative. But in the paper I received with the results it mentioned negative for celiac under the Endoscopy section which I know he did not do. And everything I have read said that an Endoscopy was the way to diagnose it anyways. I wish he would have just done the blood tests when I mentioned it because I was still eating gluten at that time.

He didn't even listen to my symptoms at all and said that my symptoms sounds too severe to be Celiac. Has anyone else heard that? Other people I have talked to had horrible symptoms like mine. Pale diarrhea, nausea, bloating, gas, tingling in my legs....

I am interested to hear what the other doctor I see will say, but that is not until the end of next month!

Celiac symptoms can be very severe. The first time I heard of celiac disease it was when a woman I rode horses with got diagnosed. Her health was getting really bad over the course of a couple of years and the docs had no idea what was wrong. I saw her go from riding her horse almost daily and being a vibrant woman in her late forties to being barely able to walk and not riding her horse. Her good friend was bringing her to the stables because she couldn't drive anymore from dizzy spells. She would watch while other people exercised her horse for her. We truly thought she was going to die and she looked like she would.

When she got diagnosed with celiac disease and went gluten free the change was dramatic. She de-aged by at least 10 years and within a few months was riding everyday again and made a full recovery.

I myself have had quite a few attacks that sent me to the E.R. so dizzy I was nearly passing out, and in such horrendous pain I thought my guts would explode. My last E.R. trip after a pizza party included severe chest pain, dizziness, vomiting and stomache pain. They thought I was having a heart attack and I was there 6 hours while they ran all manner of tests.

Thank God the E.R. doctor after hearing my history and all my stomache complaints recognized it and told me to get the blood test for celiac.

Celiac disease can also lead to cancer and other autoimmune disorders.

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