Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Should I Try?


Guest zoomom

Recommended Posts

Guest zoomom

I recently found this board and hope to find some knowledgable people who may have some insight as to what is happening to me.

I woke up one Saturday morning in April 06 with lower back pain and a bloated tummy. Well, my regular doctor thought it was due to my radical diet change in January 06 of the basic Southbeach plan. When the pain/bloat did not subside, the regular doc sent me to a neuro doc thinking I was having spasms. Well the neuro doc gave me Baclofen 40mg daily. This doesn't do much for me though.

So, back to regular doc and she puts me on Hyoscyamine with little to no help. Off I went to a GI doc two weeks ago and he had me do a CT-scan. The results from that was negative, although, there was a fair amount of stool in my intestines despite the fact I "go" daily.

My symptoms are left and/or right side pain, lower back pain and bloat. The pain can radiate to my thighs as well. The pain/bloat is consent. I have a normal appetite, normal daily bowel movement, no vomiting or nausia and because of my healthier eating habits I've lost 20lbs.

Living with this daily pain/bloat is awful! I have to admit, it is very depressing as well. The GI doc has now put me on Citalopram Open Original Shared Link to hopefully re-set my gut. It takes 3 to 6 weeks to become effective, and I've only be on it a week so only time will tell. Has anyone ever tried this med before?

Based on my symptoms, should I try a gluten free diet? If so, how long does it take to notice a change? Any insight would be great appreciated!

Robin


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Fiddle-Faddle Community Regular

Hi, zoomom, and welcome aboard!

Just to clarify--in Jan of '06, did you go ON the South Beach diet, or OFF it?

And what are you eating these days?

spunky Contributor

Since you're under a doctor's care and following his instructions, it might be a good idea to mention to him you are wondering if the initial dietary change that seemed to instigate all of this might have triggered a gluten intolerance or some other intolerance. Maybe he will give you a blood test for celiac and then you could go on from there.

If it shows celiac, you've got your answer. If it turns out to be negative, I don't kow, there might be other avenues to explore, but it still COULD be gluten-related. I never went to any doctors, I just went ahead and put myself on a gluten free diet, hoping that was it. Luckily, it was, and I knew for a fact in about 6 months of gluten free. Doing it yourself, though, from stuff I've read, would rule out getting tester later, if you decided to, because going gluten free would mess up the test sensitivity. If you have to wait for 6 months gluten free before you can actually see that you're better, like I did (I understand some people get faster results), it seems like forever before you have your answer, and that 6 months is very trying and difficult.

I would press the doctor for real answers, not just drugs. A celiac test would be a starting point (just the blood test, not the biopsy...I would NOT do that test, myself). I would want to know what it takes to be well again, not just reliant on drugs. That's just one opinion, of course; I'm no expert.

Guhlia Rising Star

Have you mentioned your suspicions to the doctor? Was he unwilling to do the test? I would start with talking to your doctor. If he refuses to do the blood testing, I would try going gluten free and see if it helps. Even if you get a negative restult on the blood test, if they can't figure out what's going on, I would try going gluten free anyway, just to see if it helps. Many people benefit from a gluten-free diet, not just Celiacs. Perhaps you just have a gluten intolerance OR an allergy...

Guest zoomom
Hi, zoomom, and welcome aboard!

Just to clarify--in Jan of '06, did you go ON the South Beach diet, or OFF it?

And what are you eating these days?

I went ON the South Beach diet in Jan.

I eat a variety of healthy foods. A typical day might look like this:

Breakfast = Oatmeal w/milk and artifical sweetner and an apple. Hot tea w/artifical sweetner.

Lunch = Green salad w/tuna and a vinergar dressing. Hot tea w/artifical sweetner.

Snack = A plum and bottled water.

Dinner = Grilled chicken breast, steamed veggies w/brown rice. Hot tea w/artifical sweetner.

Snack = Fat Free Sugar Free 1/2 cup ie cream.

Have you mentioned your suspicions to the doctor? Was he unwilling to do the test? I would start with talking to your doctor. If he refuses to do the blood testing, I would try going gluten free and see if it helps. Even if you get a negative restult on the blood test, if they can't figure out what's going on, I would try going gluten free anyway, just to see if it helps. Many people benefit from a gluten-free diet, not just Celiacs. Perhaps you just have a gluten intolerance OR an allergy...

I did not mention my thoughts about diet as it has recently only occured to me that in may be the food I am eating. I did tell the doctor about the timeline of my symptoms, but I did not ask if the diet change could have triggered an intolerance.

I see him again in a month, so I will talk to him then.

Robin

Since you're under a doctor's care and following his instructions, it might be a good idea to mention to him you are wondering if the initial dietary change that seemed to instigate all of this might have triggered a gluten intolerance or some other intolerance. Maybe he will give you a blood test for celiac and then you could go on from there.

Is it actually possible for a diet change to trigger an intolerance?

Robin

Fiddle-Faddle Community Regular

Hmmm, you are making an excellent effort at healthy eating!!!

A lot of celiacs react to oatmeal for a couple of reasons: 1)cross contamination (they are processed on the same steels as wheat) and 2) the protein in oats is molecularly very similar to gluten.

What screams at me most though, is your heavy use of artificial sweeteners. I know a lot of people who have bad tummy reactions to them, I've read a lot of info that indicates that they are a major health risk, and father of my best friend was one of the scientists who developed aspartame--and he would never let his family touch it. He said that it was improperly tested and that he was sure it wa carcinogenic. His words were: better to have the sugar, at least you can lose weight, you can't lose cancer.

If you really don't want to add the sugar to your tea (I could understand that!), you might try Jasmine tea, which is Jasmine and tea leaves, and naturally quite sweet . Some herbal teas, like licorice are also very sweet.

thanks for putting your typical day's diet out there for us. I am inspired by your discipline!

Ursa Major Collaborator

Robin, I agree with Fiddle-Faddle, it could be the artificial sweetener that is causing the trouble. Also, you are not getting enough fat. The fats nobody should eat is trans-fat (partially hydrogenated oil) and hydrogenated oils, as those are deadly. But saturated fats are NEEDED for the body to function, every cell is dependent on them (as well as essential fatty acids). In fact, our brains are mostly fat. It is carbohydrates (especially sugar and white flour) that are causing weight gain, not fat. And low fat diets cause more heart attacks than ones that are too high in fat (and of course, as with everything, you can have too much of a good thing).


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Mango04 Enthusiast

I agree that the artificial sweetner might be a problem as well. Whenever I've eaten anything with that stuff in it, I've suffered horrible symptoms including bloating and stomach aches. I like honey in my tea...and small amounts of raw sugar once in a while.

Couldn't hurt to try a gluten-free diet either :). The good news your typical diet will make that easy for you, since you alreay eat quite a bit of naturally gluten-free food. I hope you find something that works for you :)

jnclelland Contributor
I went ON the South Beach diet in Jan.

Did you start experiencing these symptoms during Phase 1 or Phase 2 of South Beach? What happens for some people is that Phase 1 of South Beach is the first time that they've ever been totally OFF gluten. This gives the body a little bit of time to recover, and as many on this board will tell you, re-introducing gluten after a period OFF gluten can result in new and/or more severe symptoms as your body sort of says, "Hey, I feel better WITHOUT this stuff!" So it's not uncommon for people to discover a problem with gluten when they re-introduce grains in Phase 2. If that's when your symptoms started, I'd say gluten is a likely cause. If not, then maybe it's more likely to be something else.

Jeanne, South Beachin' it since May :)

Looking for answers Contributor

I agree with others that artifical sweetners have caused nasty symptoms for me, including muscle cramps, eye pain and bloating. I still crave diet cokes like a crack addict, so there's something mighty potent in them! :blink: I would eliminate their use for a few months and see if you feel better. Remember, they're nothing but chemicals, so they don't do a darn good thing for your body, that's for sure! I hope you don't experience the same withdrawals I did. Hope you feel better soon!

By the way, everytime I eat oatmeal, I get bloated and feel like I have a brick in my stomach all day. May want to eliminate it too for a while and use rice bran as an alternative.

Guest zoomom

I want to THANK EVERYONE for being so kind and supportive! This is the first board I joined that members were so friendly and helpful to the newbie. :D

I think eveyone is right regarding the artifical sweetner and I am making steps to eliminate it from my diet. I'll swtiched to Stevia as it is a truely all natural sweetner. Also, I am going to eliminate dairy and gluten from my diet. Then if I begin seeing improvement, I'll slowly try to reintroduce dairy. I am not sure dairy is a problem for me, but it is a very common cause of gas and I figure it can't hurt to remove it for now.

I was reading through the symptoms of GI and discovered that "tingling numbness in the legs" is a common symptom! OMGosh, my legs have been driving me nuts the past month or so! I was think, oh great now what. I plan to tell the doctor obout my legs as the tingling is getting worse, but if I am GI, maybe this is why. ;)

Robin

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,836
    • Most Online (within 30 mins)
      7,748

    RyanOB
    Newest Member
    RyanOB
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Manaan2,  I'm so happy to hear you're going to try thiamine and magnesium!  Do let us know the results!   You may want to add a B 50 Complex with two meals of the day to help boost absorption.  Thiamine interacts with each of the other B vitamins which are all water soluble.   When supplementing magnesium, make sure to get sufficient calcium.  Calcium and magnesium need to be kept in balance.  If you choose a calcium supplement, take two hours apart from magnesium as they compete for absorption.  Take Calcium with Vitamin D.  Vitamin D helps calm the immune system.   For pain, I use a combination of thiamine, B12 Cobalamine, and Pyridoxine B6.  These three vitamins together have analgesic effects.  My preferred brand is "GSG 12X Takeda ALINAMIN EX Plus Vitamin B1 B6 B12 Health Supplementary from Japan 120 Tablets".  Alinamin is another form of thiamine.  It really is excellent at relieving my back pain from crushed vertebrae without side effects and no grogginess.   Look into the low histamine version of the Autoimmune Protocol Duet (Dr. Sarah Ballentyne, a Celiac herself, developed it.)  It really helps heal the intestines, too.  It's like a vacation for the digestive system.  Add foods back gradually over several weeks after feeling better.   I'm so happy to have pointed the way on your journey!  Let us know how the journey progresses! P. S. Add a Potassium supplement, too.  Potassium is another electrolyte, like magnessium, that we need.
    • Manaan2
      @knitty kitty I can't thank you enough!  My husband and I already started looking into those supplements.  We definitely plan to give it a try.  We've been against the Miralax since it was originally advised by PCP, but because of the level of pain she experienced on a daily basis, we decided to try it.  We've made many attempts to gradually decrease but due to her pain and related symptoms, we've kept her on it while trying all sorts of other dietary adjustments pre and post diagnosis specific to food; so far none of those efforts have made a significant difference.  I will definitely share how she's doing along the way!
    • BIg Nodge
      Hi, I have recently embarked on the gluten-free journey. I have what to me seems like a somewhat confusing set of test results and symptoms. I have been impressed by the accumulated knowledge and thoughtfulness as I browse this forum, so I figured I'd make a post to see if anyone can offer any insight. I know there are many posts like this from new users, so I have tried to do my baseline research first and not ask super obvious questions.  I'm 43, overall very healthy. No history of gluten sensitivity or really any of the classic GI symptoms. About three years ago I started to experience intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe). The symptoms over time have become fairly significant, though not debilitating, I am able to exercise regularly and am fairly physically active, continue to perform well at work. But for example I have gone from someone who consistently ran hot, was always cranking the a/c, to someone who wears a down vest inside at work in winter and get chills if the a/c even blows on me in summer. I get tired and lose energy even when getting decent amounts of sleep, and have to have my wife take over on long drives that I could previously handle with no problems. More generally when I am experiencing these symptoms they seem to crowd out space in my mind for focusing on my family, my hobbies/activities etc, I sort of withdraw into myself.   I happened to be experiencing these symptoms during an annual physical with my PCP a few years ago, he observed post nasal drip and suggested it was allergies and that I treat it with claritin. At first it seemed to respond to claritin (though not zyrtex), but over time I became unsatisfied with that answer. There didn't seem to be any seasonal rhyme or reason to my symptoms, and I felt like I was on an endless loop of taking claritin, then stopping, not being sure if it was even making a difference. I did eventually get allergy tests and found modest allergies to dust and pollen, which didn't feel like a smoking gun.  I then started seeing a natural medicine doctor who was much more willing to explore my symptoms via testing. The first thing that came back abnormal was elevated thyroid peroxidase antibodies/TPOs, 137 IU/mL vs a reference range of <9. At the same time my thyroid panel showed normal thyroid hormone levels. So it appears my immune system is attacking my thyroid even though it is working fine. I got a thyroid ultrasound at the time, it was clear, but with some abnormalities such that they suggested I get is scanned again in a year. These are certainly risk factors for a thyroid autoimmune disease, though my thyroid seems to be working fine for now.  From here my doctor considered celiac due to the murky thyroid/celiac links, so we did a panel. Results were as follows: TT IGA <1 U/ml, TT IGG <1 U/ml, deamidated gliadin IGA 24.6 U/ml, deamidated gliadin IGG <1 U/ml, IGAs 170 mg/dL. Readings greater than 15 considered high by my lab for the first four, my IGAs are within reference range. So basically just the deamidated IGA popped, but my IGAs are normal. I also notice on the tests that my thyroglobulin was high, 86.7 ng/ml vs a range of 2.8 - 40.9.  My doctor suggested that it certainly wasn't conclusive for celiac, but it was possible, and likely that I have some sort of gluten sensitivity. She suggested going gluten free and seeing how I felt as opposed to doing a biopsy. The best theory I can come up with is perhaps I am a silent celiac or just have a gluten sensitivity that doesn't produce immediate GI symptoms, but is still doing damage and over time has caused leaky gut. So now gluten is getting into my blood, and my immune system is attacking it but also mistakingly attacking my thyroid.  So that's what I did, went gluten free in October. It's been about four months, and I am really not feeling any difference. I still get the same symptoms that come and go. My bowel movements may be a bit more regular, but it was never a major issue before so I would consider that a minor improvement. I know that it can take a while to see improvements, and I am going to remain gluten-free and see how I feel. But I am definitely questioning whether I really understand what is going on, and am open to any thoughts or suggestions from the forum. Sometimes I wish I just went ahead with the biopsy before going gluten-free. While I would certainly be down to start drinking IPAs again ahead of a biopsy, you know, for science, I feel like at this point I would be throwing away four months of work and am better off staying the course and seeing what happens. But I'm really not sure.  I know there is a lot of thyroid knowledge on these boards, along with the celiac expertise, so I'm curious if this resonates with anyone's experience. And I'm interested in what sort of timelines people have experienced in terms of feeling improvements for some of these non-GI symptoms like chills, SOB, brain fog etc. Thanks in advance. 
    • cameo674
      Does it taste like black licorice?  It said it was chewable.  I do not like that flavor.     Since the burn at the back of my throat is there everyday, I usually only take something when it is unbearable and keeping me from ADL especially sleep.  
    • Scott Adams
      Your concerns about Nando's cross-contamination practices are valid and important for the celiac community. It's disappointing that Nando's does not have stricter protocols for children's portions, especially given the risk of cross-contact with gluten-containing items like garlic bread. Cooking gluten-free items on shared surfaces, even if cleaned, is not safe for individuals with celiac disease, as even trace amounts of gluten can cause harm. While the adult butterfly chicken may be a safer option, the inconsistency in practices for children's meals is concerning. It's frustrating that Nando's headquarters did not take responsibility, but sharing your experience raises awareness and may encourage them to improve their protocols. Consider reaching out to celiac advocacy organizations to amplify your concerns and push for better standards. Always double-check with staff and emphasize the importance of avoiding cross-contamination when dining out.
×
×
  • Create New...