Questions For You, The Experts...(Advice Needed)

[spirit-walk]

I still fairly new to the board, and I'm not diagnosed Celiac. I had removed gluten from my diet several months  before I had my endoscopy.

 

A little history...I had a severe onset of joint pain in March of 2012. I was convinced I had RA but have been told by four rheumys that I do not have arthritis including one at the Mayo Clinic. After seeing rheumatologists, an orthopedic surgeon, a nerve specialist, and a gauntlet at the Mayo Clinic (along with GPs), I finally settled in on seeing a GI doctor in Austin. Noone knows what is wrong with me, and I was told by Mayo that I have some kind of autoimmune response coming from the gut. Whether it's Celiac or not, I don't know, and I'm not willing to go back on gluten to figure it out...at least not at this point. I was in so much pain (joints only) that I wanted to do anything to feel better. Adding gluten back was not an option. With a VERY clean diet, my joint pain has improved, but now they pop. On bad days my shoulders, wrists, elbows, knees, and ankles will pop. Right now I'm experiencing these symptoms. I can go weeks where my joints don't pop too much and then they'll pop like crazy for weeks. I'm convinced food and weather are both tied to my popping and pain.

 

I'll also add that I've suffered from mouth ulcers, seasonal allergies as an adult, and have had difficulty gaining weight my entire life. I've had constipation (likely due to poor diet). I had a lot of diarrhea as a kid and through my teenage years. I used to wonder why I always had an upset stomach and my siblings didn't. Those symptoms went away through my college years and never really surfaced again. I ate terribly and never drank water. It was sodas, fast food, Starbucks, candy, and chips most of the time. Meanwhile I was never overweight, never had high cholesterol, or high blood pressure. I thought I could eat anything I wanted as long as I exercised! That all changed in March of 2012 with the onset of severe joint pain. I couldn't even lift my 2 year old daughter without feeling like my wrists were going to break. Washing dishes or turning door handles was excruciating in the beginning. In hindsight, knowing what I now know, I think I could have been asymptomatic for years and damaging my body. I used to wonder why my wrists and hips hurt and thought is was from old athletic injuries. But now I look back and realize that doing pushups in my mid 30's shouldn't be painful in the wrists. After removing gluten and other unhealthy foods, I no longer get mouth ulcers, I have less allergies than ever, and I don't get sick very often at all (other than pain in joints or stomach).

 

So I've been on this near-2 year journey of eating healthy and trying to understand what is wrong with me. My wife has been very understanding and supportive through the process, and we have a 3 year old daughter as well. I think it's very possible I have Celiac or something very similar to it. My GI doctor agrees, but I have no diagnosis.

 

So after cleaning up my diet with simple, clean foods and nothing but water, honey/organic fruit spreads for sweeteners, and no gluten, dairy, nightshades, eggs (although I still eat Udi Bread), and many other foods that I was tested to have inflammation to, I have lost a lot of weight (from 155 to 130 pounds) and I'm now starting to have some stomach issues. I can't eat salads anymore, and now my stomach/intestinal area has pain/gurgling at times. Sometimes I have diarrhea, sometimes I don't. I had to stop juicing after doing it for weeks without problems. Suddenly my stomach said, "no thanks" along with salads and sliced cucumbers. I'm wondering if almond butter is doing it now or rice. It seems as though my joint pain has improved, but my stomach is slowly becoming weaker and less tolerant to foods.

 

So a couple of questions (any other advice is welcomed as well):

 

1. I currently take a probiotic by Transformations ($50 for 30 capsules). I take it early in the morning. Should I be taking two a day instead of one? They are expensive, but I've found that Renew Life brand seems to give me the same pain as salads now.

 

2. How long through your journeys did it take you for your gut to heal to the point that you weren't experiencing more pain/upset stomachs? I've had these joint issues for almost two years, but I haven't been strictly gluten free for that long. I used to eat chips from factories that produced soy/wheat, and I used to eat out at Jason's Deli and other places where CC can occur. I stopped all that about 2 months ago.

 

Finally, do any of you have joint pain and popping? I've asked this question on the board before, but it never hurts to ask again. Perhaps someone will see my post who didn't before who can shed some light my way. Thanks for taking the time to read my post, and thanks for any advice.

[mamaw]

hello.. here  my opinion  on a few  of  your ?'s......You  could  be  celiac  or  gluten sensitive. Have  you had  your  gallbladder checked? From  years  of  being  gluten-free I've  always  heard  one  should  rotate  their  probiotic, not  using  the    same one  over  &  over  for  months..Have  you  tried  digestive  enzymes  before  meals? digestive  gold  is  a  good  one... 75% of  all  health  issues  begins  in the  intestinal  tract....

people  who  have  one autoimmune  disorder  through time  usually  end  up  with  more  autoimmune. I  for one   now  have  several autoimmune things  going  on....

Cracking  & popping  in joints, me  too... Mr  Arthur  has  set  up  shop in  my  joints... It  could  be  just  normal  wear  ie:  someone  who  types  all  day,  carpal tunnel....

I  would  ask  your  doc  for  a  complete  blood  work -up  metabolic, CBC hs CRP, ANA, iron,  calcium,  thyroid panel (not  just  TSH),ferritin, cholesterol, bone  density scan,  liver, gallbladder  scan, endo  to see  if   leaky gut, ulcers & things  like that...

Be  checked  for  other  things too. Colitis,  crohn's lupus...RA

Take  steps  to  rule  out  issues 

 

Does  your  daughter  have  any  symptoms  that  you notice? our kid  was  2 1/2  when  he got  put  on  a gluten-free  diet. he  was  a  shell of  a  child  but now  at  13  he is  thriving.....

hope  I gave you some  ideas......oh  are  you drinking  lots  of  water?   Half Your body weight   in  ounces  of PURE water not  from  a city water  spigot!!!! Not  all at  once  , spread  it out  doing  the  day ....

[nvsmom]

I too was convinced I had lupus because of my arthritis. I felt 80 rather than 35. It did not improve immediately on the gluten-free diet, infact it got a fair bit worse before it started getting better at 6 months gluten-free. Even after an entire year gluten-free I still had a flare up of joint pain this winter. My rheumy told me it wasn't lupus and was probably my celiac. I'm optmistically hopeful that she was correct.

 

Your diet sounds like it was cleaned up but if it is heavy in carbs, or has not been clean long, it could have affected your health.. Have you been tested for prediabetes or diabetes with fasting glucose, insulin and A1C tests? I know you said you are not overweight but obesity is now being found to be a result of the activities that cause diabetes, and not (always) an actual cause of diabetes as previously thought. I know this because I have recently discovered that I am prediabetic even those I am just on the cusp of the BMI chart for being overweight. Too many sodas I guess... Anyway, prediabetes has many of the same health risks as diabetes (including arthritis) but the body does not have a high insulin resistance yet, even though blood glucose is out of whack.... It could be something to check into.

 

Hypothyroidism can cause many of those symptoms too (constipation, arthritis). Have you checked your TSH, free T4 and T3, and TPO Ab lately?

[GFinDC]

Hi,

 

Nightshades (tomatoes, peppers, eggplant, potatoes) are known for causing joint pain in some people.  I see you are already avoiding nightshades, so that's good.  Soy can cause joint pain too, but you are off that too.  Another possible problem is dairy but you are off that too.

 

You could ask the dr to test you for H. Pylori.  And low stomach acid.

 

Udi's bread is pretty good, but it does have a lot of ingredients in it, some of which might cause a reaction in some people.  I suggest you drop it for a few months and eat corn tortillas or rice tortillas instead.

 

Have you tried an elimination diet?  They can sometimes work very well to find food issues.

[bartfull]

Actually, among the many nasty things corn can do to those who are sensitive to it, joint pain is common.

 

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[designerstubble]

I am 14 months in gluten free, just has my repeat biopsy (normal), but I still suffer with loose bowels very often... I also juice, and sometimes my guts hate salad... Interesting. I used to have joint problems, and all sorts of strange body pains, thankfully they have mostly resolved although I seem to suffer with tendinitis a fair bit. My diet is very restricted though, I kept a food/symptom diary for a while, it was really useful. I am still in the process of adding food in. I cut gluten, dairy, corn (look out for corn!), some fruits, some spices, caffeine. Eating only whole foods except rice cakes, red wine & dark choc occasionally.

Try the diary?? It can't hurt and could very well help.... Good luck

Oh btw, my joints always pop!! My osteopath says it's normal, it's just where the fluid sacs release pressure, apparently more common as we age!!

;-)

[Nick-incollege]

Probiotics are a bit of a scam, no offense. I don't take them. I do take multivitamins (gluten free) and iron supplements when I'm reacting (and should when I'm not, but they are slightly pricy). Since you're a celiac you have an extremely hard time absorbing nutrients, so many of the symptoms you have isn't actually a direct symptom of celiacs, but is a result of mostly iron deficiency or not having enough of another vitamin.  

 

In general, vitamins are also one of the biggest scams on earth. You don't need them. Studies actually show that the current FDA approved dosage for multivitamins still has pretty harmful effects. That being said, we have celiac disease, which is a bit different. The inability to absorb nutrients/vitamins is pretty real, so I go for it. I try to eat a lot of meat too.

 

 

 

It took me a couple of months after "strictly" going gluten-free to feel more up to par, although within 2 weeks of my last reaction I started to feel a fair amount better. It's different for different people so if you still feel bad after 2 months, I'd begin to think something else is up but I wouldn't be completely sure yet. I'm 21 and 125 pounds so it's probably a bit different for me.

 

And by strictly, I mean only eating foods that are labeled gluten free or the manufacturers web site says gluten free. If the ingredients look okay but it isn't disclosed on their site or label, I stay the hell away from it. If they don't disclose it in either place, there's usually a reason. (A reason that's bad for us)

 

I'm a bit less strict with liquids, if the ingredients are fine I usually go for it. I try to stay away from soy since it can many times be cc'd with a HUGE amount of gluten. (Up to 33,000 ppm)

[designerstubble]

I beg to differ with saying that vitamins are a scam. It's unfortunate that our lands are over farmed and that our foods contain at least 35% nutrition than 50 years ago. Add into that GM and Monsantos chemicals, and modern society's predisposition to eat highly processed food, you will find most diets highly deficient. I would also suggest you research the FDA and perhaps not place quite so much faith in an organisation that recently passed a new law exempting pharmaceutical companies any responsibility should their FDA approved 'medicines' cause injury or death.

Going back to vitamins and minerals, yes, adding to the fact that our diets mostly don't meet our requirements and that we are indeed celiac, I think we should be vigilant about our vit stats. Also, if considering taking vitamins, looking at colloidal form as opposed to 'tablets' or 'capsules' as colloidal passes straight through to the liver, ready to be utilised by the body.

I have taken Neways colloidal minerals, the improvement in my nails/skin in 3 weeks was great. There's proof in my pudding!

[1desperateladysaved]

For probiotics  I use Restore Pro-biotic that I can from Azure Standard.  My son has used that and Innate Choice.  He was tested and had a good supply of good bacteria in his gut.  I believe it is good to vary the probiotic one uses.  Maybe it is about time for me to try some others.

 

The Restore comes with 98 servings for under 30 dollars.  I add the powder (with organisms only) to water and drink it.  One can also sprinkle it over food.

 

D

[notme]

probiotics are not a scam.  if anything is, it's multivitamins <plus, once you are healed enough, your body will absorb the vitamins you need from a healthy, clean, balanced diet.  unless you drink a crap ton of alcohol - then your brain will be pickled lolz therefore clouding your judgement.  i take probiotics 2x a day, morning and night.  it's culturelle and i probably should switch off being as i have been using the same strain for awile now.  i don't take any vitamins except D that was prescribed by my doctor because i had a deficiency.  all of my other vitamin levels were spot on perfect. 

[kareng]

P. Since you're a celiac you have an extremely hard time absorbing nutrients, . That being said, we have celiac disease, which is a bit different. The inability to absorb nutrients/vitamins is pretty real, so I go for it. I try to eat a lot of meat too.

 

 

 

And by strictly, I mean only eating foods that are labeled gluten free or the manufacturers web site says gluten free. If the ingredients look okay but it isn't disclosed on their site or label, I stay the hell away from it. If they don't disclose it in either place, there's usually a reason. (A reason that's bad for us)

 

 

 

 

 When a Celiac has healed, they should be able to absorb most nutrients just fine.  If you don;t get enough in your food, then a vitamin pill might be a good choice.

 

 You should not limit yourself to eating only processed items that say gluten-free on them.  Items that are not labelled gluten-free are very healthy - meat, fruits, veggies, beans, etc., likely more healthy than a labelled gluten-free cookie or roll.

[NoGlutenCooties]

Probiotics, digestive enzymes, and other supplements are definitely not a scam.  There are good brands and better brands and other brands that don't seem to work so well (at least for me) but they are a necessity for many people.  Once a Celiac has healed and managed to get their nutrient levels back up to normal they may not need supplements anymore, but it can be very difficult to get all of the nutrients that you need from your food because the quality of our food is not what it used to be.

 

IMO... probiotics are especially important because your immune system essentially lives in your gut, and so does the base of our health because without food absorption we're dead.  And our clorinated, over-treated, anti-bacterial world is continuously trying to kill off all bacteria - good and bad.  It is important to replace the good guys in there to keep the balance.

[notme]

IMO... probiotics are especially important because your immune system essentially lives in your gut, and so does the base of our health because without food absorption we're dead.  And our clorinated, over-treated, anti-bacterial world is continuously trying to kill off all bacteria - good and bad.  It is important to replace the good guys in there to keep the balance.

yes, yes - also, most of us have had more than our fair share of bacterial infections which doctors prescribed "kill everything" antibiotics, and unfortunately, in killing the bad bacteria, it also kills the good bacteria which is necessary for digestion.  i know i was a safe bet to have pneumonia every year, and usually some other ailment.  for, like, 30 years.......  untreated celiacs are a good target for evil germs because our immune system is already compromised.  like shooting fish in a barrel.

 

i just went through my second winter without having to go to the doctor with pneumonia or something that my body couldn't fight off on it's own.  every cold or virus i ever caught progressed into bronchitis or pneumonia that required me to be treated with antibiotics.  not since my gut started healing:  i now have Super Guts!!!!!!!!!  lolz