Author Topic: It's wheat not just the gluten, alas.  (Read 373 times)

Carolina

  • Hero Member
  • *****
  • Posts: 5505
  • —if it ain't one thing, it's another." Roseanne R.
It's wheat not just the gluten, alas.
« on: January 06, 2018, 09:42:47 AM »
Dear Dearest Angels,

As you know I developed IBS-D (Irritable Bowel Syndrome-Diarrhea) last year.  I followed the FODMAP elimination diet and had very significant success.

I, however, had hoped that with wheat only Gluten was a problem.   And because of the complex nature of the food interactions during the day, I wasn't always sure why I had had 'an episode.  The 'whole corn crisis' was an exception for sure!  Also the multiple frozen ice-cream dessert crisis.  I have only lactose free milk now, and that's fine.

However, yesterday, after a very light breakfast, I didn't have anything more to eat until mid afternoon when I had two pieces of Udi's gluten free toast.   I immediately had the amazing first reaction in my small intestine.  Not terribly painful, but very clearly in reaction to the gluten free wheat bread.  The rest of the day I had only scrambled eggs, rice cakes and a frozen fruit bar. 

Then this morning, I had the very unpleasant second stage, abdominal pain and diarrhea   :o

So, no more gluten free wheat pasta or bread for me.  The effects are very clear and create a total desire to comply with whatever it will take.

So of course I did some research about WHY I developed IBS in my 75th year, after having a cast iron gastric system for all of the years before.

Much is made of possible Bacterial Overgrowth as a co-condition.  I was trying to establish what probiotic might help.  Then I found that one of the causes of IBS is neuropathy.

And it all became clear.   My neuropathy is wide spread, and has affected my gastric system in many ways.  In fact, on Tuesday, I am having an endoscopic procedure to open the sphincter at the bottom of my esophagus, and to inject botox into the walls of my esophagus to help with the almost constant problem I have with failure of food to move down after I swallow.

Of course the answer is to stop eating anything that causes abdominal distress.  That's easy enough.  I did wonder if there is the 'right' probiotic.   There seem to be several points of view.

By the way, do any of you have SIBO?  and if so, how do you treat/diagnose it?

When I first developed profound Peripheral Neuropathy, I was afraid that it would spread up my body, paralyzing me, as it has paralyzed my legs.  That hasn't happened, but organ/system by organ/system I have the effects of neurological damage which affects my life.

Since I have always had a problem 'limiting' my eating (compulsive overeater actually) this 'problem' actually has a positive side effect.  I have been able to lose some weight in the past 6 months.

I remind you again of the FODMAP food elimination diet which has helped me so amazingly.

http://fodmapfriendly.com/what-are-fodmaps/

I did have some pumpkin soup (organic) today.  It is so very cold and I seek hot things to eat.

Hope you are all staying warm, and well.

Hugs,  Elaine



Female-76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-SIBO, Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil

susanep

  • Hero Member
  • *****
  • Posts: 3602
  • Each Day Is A Miracle !
Re: It's wheat not just the gluten, alas.
« Reply #1 on: January 06, 2018, 11:54:11 AM »
Elaine, I am sorry to hear of so many issues you have to deal with. I doubt I am much help, but I know I need the stretching or whatever they do to my esophagus due to trying to have my food go down when I eat as it should.

My mother had terrible peripheral neurapathy in her legs and feet, and they became like parylized at the end even though she had the pain she said that felt like having her feet in boiling water. I felt so sorry for her in such pain all the time. She also got choked so easily trying to get food down.

I know another woman I use to work with that finally quit work due to peripheral neurapathy she said in her chest. I had not heard of that, but she said it really hurt and changed her life.

My dear mother actually passed away after one night she fell and hit her head against the mantle of their fire place, and then she died that night in her sleep. I am sure she had a brain bleed due to the fall which was a hard one from what my sister said, because I wasn't right there.

I have you in my prayers, and hope you get some answers and relief.

Big Hug!!!
susanep
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

Deb 27

  • Hero Member
  • *****
  • Posts: 628
Re: It's wheat not just the gluten, alas.
« Reply #2 on: January 07, 2018, 08:50:11 AM »
  Elaine, I am sorry that you are having IBS.  I think there are some tests they can do for SIBO. Do you take a probiotic??  Sometimes that helps. I have a friend who has IBS and was helped with the FODMAP diet. Sometimes I think all our medications deplete our good bacteria.

Some  Functional Medicine docs do an IgG test for food sensitivities. A lot of people with  intestinal problems have these and you feel better when you eliminate them from your diet. I had a lot of them! I try to eat a very basic diet of meat, lots of vegetables, fruit and a few carbs.  I try to stay gluten and dairy free. I do cheat on occasion and if I keep it to a minimum, I don't have a problem. The gluten actually makes my RA worse.

It seems that we have very sensitive and complicated systems and each day is a brand new challenge.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  prozac, Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, alpha lipoic acid, multi vitamin.

Sooki

  • Hero Member
  • *****
  • Posts: 861
Re: It's wheat not just the gluten, alas.
« Reply #3 on: January 09, 2018, 10:41:54 AM »
I think of myself as gluten sensitive, but ingesting wheat grass juice, which is billed as absolutely gluten free, is like mainlining gluten - the symptoms come on quickly and intensely.   I find that keeping grain free, avoiding even rice, helps the most. I also avoid nuts and seeds.  I cheat once in awhile with a gluten free toast, pay the price, and then avoid them.  I haven't been disciplined enough though to try FODMAPs in addition. 

For me, the response isn't intestinal, it's inflammation where tendons meet the bone and general buzzing and neuropathy in my feet and ankles.  So, "tennis elbow", side of my calf, fingers, neck, lower back, knees, and the "lifters" in my ankles.  It's pretty dramatic and avoidable (for me).

I try to think of these food issues as a way I can help control how I feel.  It's a relief to know things that help.  I only sometimes feel deprived (and then I cheat and stop).

I'm sorry you have to add yet another thing to your list of foods to avoid.  It's hard on not only your own diet but also social situations which involve food (and most of them do it seems).  I hope you find a combination which makes you feel satisfied and is gentle on your body.
68 yo, Sjogren's, Lupus, Hashimoto's, fatigue, MGUS, peripheral neuropathy, ocular rosacea
Plaquenil, CellCept, Synthroid, Atorvastatin, Xiidra, D3, biotin, B12, ALA, DHEA, Ubiquinol, CPAP, black current seed oil, D-mannose, Paleo AIP, fish oil, eye ice packs, Cliradex wipes

Carolina

  • Hero Member
  • *****
  • Posts: 5505
  • —if it ain't one thing, it's another." Roseanne R.
Re: It's wheat not just the gluten, alas.
« Reply #4 on: January 09, 2018, 12:33:51 PM »
Dear susanep,   I'm sorry your mother suffered so much.  I take 3600 mg of Gabapentin a day, and that pretty much keeps me pain free with my PN and Small Fiber Neuropathy.  I am paralyzed, more or less, in my legs and feet.  I can walk with braces and a walker, however,

Dear Deb, I was taking a probiotic, and I'm waiting for a new one to arrive in the mail, which is recommended for those is IBS. 

Dear Sooki,  I thought it was gluten but it is WHEAT.  With or without gluten....so now I just don't have it.  It was so hard at lunch today, at an Indian restaurant.  They brought out the warm Naan, and I so wanted some.  But no, I didn't have any.    I can have rice, so far.  And if I have the nuts allowed on the FODMAP plan, I chew them very carefully.

It is clearly the neuropathy that has brought on this IBS-D.  I am dazed and amazed that I now that so many food 'issues'.  All my life I only had a severe reaction to eating lamb or any sheep products (feta, for example).  But that was one category and easy to avoid.   Now onions and garlic are OUT, along with so many other common things.

It turns out to be easy enough to follow any food plan like FODMAP when the price for eating the 'wrong thing' is so high, and so immediate.

I had the procedure on my esophagus today, and all went well. 

I have to go over all my 'conditions' prior to surgery.....so boring.

Hugs,  Elaine
Female-76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-SIBO, Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil