Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Losing Hope...


  • Please log in to reply

135 replies to this topic

#121 Bubba's Mom

 
Bubba's Mom

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,457 posts
 

Posted 12 November 2012 - 02:36 PM

I learned SO much here and thank you all for help with the journey. I finally saw a GI (who is great). She did a genetics test for Celiac and it was negative. Also did SIBO test and was positive. Lots of bacterial overgrowth. I went on Xiflacin for 10 days and then my tongue started to swell so had to go off but she thinks it was likely long enough anyway. Today I had a gastric emptying study and it was normal. I am still sick - but now we have to go the route of food allergies. Still nauseous after every bite of food, still can't/don't eat dairy, soy or gluten and still have awful bloating and pain. She's going to test for gallbladder function and re-do the kidney test.
I think about all of you and what you struggle with and how hard it is. I carry you all in my heart now!
Kimberly

I really suspected you had SIBO. Be sure to take probiotics. The Xifaxin kills all bacteria, even the good kind. You need to replace it with a supplement. Probiotics also help get rid of bad bacteria that the antibiotic may have missed.
It takes a while to heal. The SIBO causes damage to the intestine just like Celiac.

There's a thread here about Nettle Tea. Quite a few of us are drinking it and finding it helpful for inflamation..maybe you could try it?
Also, your GI can prescribe pancreatic enzymes to help digest your food. Much more effective than the over the counter ones.
(hugs)
  • 0

Celiac.com Sponsor:

#122 Bubba's Mom

 
Bubba's Mom

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,457 posts
 

Posted 12 November 2012 - 02:38 PM

I'm glad you have found yourself a good doctor, but so sorry to hear you are still in pain. :(

One more suggestion as far as an elimination -- corn. For me, corn gives the exact same symptoms as gluten, and it is a problem for many other celiacs as well. It might be worth a trial. :)

Shroomie was posting at the same time as me. Yep..try omitting corn. Actually, 90% of all soy, and 85% of all corn is genetically modified to produce pesticide. I stay away from anything GMO now.
  • 0

#123 kswan08

 
kswan08

    Community Member

  • Advanced Members
  • PipPipPip
  • 35 posts
 

Posted 18 November 2012 - 05:35 PM

Thanks for suggestion of eliminating corn and trying nettle tea. I have remained gluten, soy and dairy free since June 25th. I don't eat corn in general, but it could be in some other foods. I've always found corn hard to digest.
Done with Xiflaxin and actually, finally, feeling a little better. I am taking Align probiotics. I use Digest Gold as digestive aid (discovered it here) but I'm going to talk with GI about pancreatic enzyme. Can you tell me what GMO stands for?
Still have bloating and often have pain after eating. I think GI is going to send me to an allergy/immunologist to look at my Ig levels and see what foods I may be allergic to - maybe this can cause pain?
Will have another colonoscopy in February but will be done in-patient this time. What a nightmare in August. At least I finally have a really good GI doc.
  • 0

#124 mushroom

 
mushroom

    Mushroom

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,448 posts
 

Posted 18 November 2012 - 05:42 PM

GMO = Genetically Modified Organism Most common modification is to make crop "round-up ready", i.e., immune to Round-up.
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#125 GFinDC

 
GFinDC

    A little farting never hurt anybody... :-).

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,134 posts
 

Posted 19 November 2012 - 09:40 AM

Soy, corn, wheat and canola oil are often genetically modified versions in the USA these days. You can look for GMO free labels or organic labels if you want to avoid GMO's.

IgE immune responses are what make hayfever type symptoms, and they can come up very quickly. IgG immune responses are slower starting and with food tend to be to start the gut. Food intolerances are IgG or IgA immune repsonses. Yes,they can cause pain. These are the responses that destroy the villi in the gut with celiac disease.
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#126 kswan08

 
kswan08

    Community Member

  • Advanced Members
  • PipPipPip
  • 35 posts
 

Posted 14 January 2013 - 04:39 PM

I'm scheduled for next colonoscopy in February. First one in August was so awful, as many may remember. Spent 4 hours in recovery room sick as a dog - severely dehydrated. Not looking forward to this next one. I began to feel better after the xyflaxin ended but still struggle with my gut. I'm seeing an allergist in February too and will have all the Ig tests, among others. I have huge allergies so maybe this testing will yield more helpful info.

  • 0

#127 kswan08

 
kswan08

    Community Member

  • Advanced Members
  • PipPipPip
  • 35 posts
 

Posted 14 January 2013 - 04:41 PM

I remain gluten, soy and lactose free. Never going back! Having issues with increased anxiety and not sleeping well but I suppose this could just be life. Still, it feels different.
K.
  • 0

#128 Bubba's Mom

 
Bubba's Mom

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,457 posts
 

Posted 15 January 2013 - 07:11 AM

I remain gluten, soy and lactose free. Never going back! Having issues with increased anxiety and not sleeping well but I suppose this could just be life. Still, it feels different.
K.

It sounds like you may have another food intolerance? It's hard to figure some of them out. I hope you keep a food/symptom log?
Having SIBO can damage the villi and let proteins from foods leak into your blood stream. Those proteins are seen as invaders and your immune system flares. It may not show up on allergy testing. Mine didn't. There's just no good way to test for intolerances, so log helps sort it out.

I had a severe case of SIBO too. I was given a couple of antibiotics, but they didn't seem to help. There are many different strains of bacteria which are treated by various antibiotics. You may want to ask for a retest for the SIBO? It's possible you had more than one "bad" strain?
If you get retested be sure to stop the probiotics for 1 week prior to the test. Otherwise, continue to take them. Fighting off SIBO takes time.

Also, if your iron levels are dropping you may get anxietry symptoms. Just one more thing to be alert to. It could be that you aren't absorbing iron well, or you could have a small amount of bleeding somewhere? Ingesting a food that you are intolerant to can cause anxiety or irritation with some bleeding in the digestive tract. In my case I found that ingesting corn products caused those type of symptoms.

Good luck with your scope. I hope they can give you some answers.
  • 0

#129 Seifer

 
Seifer

    Community Member

  • Advanced Members
  • PipPipPip
  • 34 posts
 

Posted 15 January 2013 - 11:48 AM

You mentioned that you cooked with olive oil and vegetable oils. I would advice against this. You shouldn't heat olive oil as it will go rancid very easily and become hard to digest. Polyunsaturated omega 6 vegetable oils are inflammatory and surpress the thyroid. It sounds to me that you could be hypothyroid.

Instead try cooking with butter,ghee,coconut oil,lard and tallow, these can take the heat and are a lot healthier for you and your metabolism. I recommend reading up on Ray Peat PhD work on this
  • 0

#130 kswan08

 
kswan08

    Community Member

  • Advanced Members
  • PipPipPip
  • 35 posts
 

Posted 16 January 2013 - 08:41 AM

Thanks. Going to request another SIBO. Colonoscopy repeat is due to size of polyps found in August. It is hard to figure out food intolerance which is a bit frustrating. I have terrible allergies but need to look even closer at what I'm eating - may be even more to cut out. I can look at corn- based foods to see if I am reacting to any and also see if my anxiety levels follow a pattern with what I am eating. I haven't kept a food log because I pretty much eat exactly the same thing all the time but there are subtle changes that I will now look more closely at. Will also ask to have iron checked. All good info - thanks so much!
  • 0

#131 squirmingitch

 
squirmingitch

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,323 posts
 

Posted 20 January 2013 - 07:30 PM

Also something to consider is GMO foods. I found I have a problem with GMO foods. Nothing like you are going through but I get little dizzy spells when I've eaten GMO corn products or canola oil. So I just stick to non GMO & have no problems. Just a thought.
  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#132 Madagascar

 
Madagascar

    Community Member

  • Advanced Members
  • PipPipPip
  • 59 posts
 

Posted 20 January 2013 - 10:56 PM

regarding the anxiety issue - apparently because of the damage to our small intestines, many people with celiac are deficient in tryptophans. this affects one's ability to make serotonin and melatonin. i took 5HTP for a couple of years and it helped me SO much with sleeping at night (put me out cold and i slept all night) and anxiety. melatonin helps you sleep at night. serotonin is your feel happy hormone - the opposite of anxiety, and tryptophans are used by the body to make serotonin and melatonin.

when i started taking it i thought i'd found a miracle supplement. i handed out samples to several of my friends and not one of them found it helped them sleep. i couldn't believe it. But my son took it and it helped him sleep and it also reduced his anxiety attacks. now it turns out that both of us have celiac disease.

it seemed like it stopped working on me a few months ago, so i stopped taking it. took it a couple of weeks ago and it didn't do a thing. so i guess i'm not deficient in it anymore.

think of it like making bread - if you haven't got flour (of some sort!) you can't make bread. in your body, if you don't have enough tryptophans you can't make serotonin or melatonin. I read lots of info about it and then asked my chiropractor/naturopath about it. she sold me a bottle and - well i had a great couple years of sleep and less anxiety. i buy the one made by Thorne Research Labs, figuring that made by the research lab might make it more reliable since supplements aren't regulated. You can get it online from Pure Formulas - or other brands you can buy at your local drugstore.
  • 0
Childhood: canker sores, zillions of cavities, and multiple dental enamel defects (not decay). Acne began at age 9, became cystic acne at 15ish, was bad til early 20's, occasional break-outs now only if i eat certain foods.
1968 - allergic to bacon (arm rashes) & orange juice; sensitive to soy
1970s - lots of digestive problems, allergy to citrus, citric acid, cinnamon, lactose intolerant, rosacea from foods
1980s - allergic to oregano, basil, thyme, pork, strawberries, paprika, smokehouse-type seasonings, peppers
1990s - discovered digestive enzymes (YAY!) and my stomach issues resolved by 90%
2012 - diagnosed with celiac via blood tests (tTG) and genes (HLA DQA1*0201: DQB1*0202)
After learning about celiac, it is obvious my mom had it (ulcerative colitis), my brother has it, and my 3 young adult children have it (2 have digestive problems + anxiety; one has DH). we all went gluten-free november 2012.

#133 Flaykee

 
Flaykee

    New Community Member

  • Advanced Members
  • Pip
  • 17 posts
 

Posted 21 January 2013 - 07:05 PM

Here's what I was thinking... I would hold off to start eating gluten until I am a month away from endo. I still haven't heard anything. My PCP called me yesterday and said, "I doubt someone at age 55 would suddenly become a celiac but I will let you have an endoscopy. You need to have an abdominal CT scan to see if you have a mass or cancer." Such kindness is overwhelming .. grrr. As if I'm not scared enough. Same doctor that said I didn't have Vit D deficiency until I insisted on a test. And am on my third round of 50 thousand units of D b/c my body is not "holding onto the D." She refused testing me for any other deficiencies stating it wasn't necessary. Sigh.
So .. I am still bloated, today had cramping, wake in the night feeling nauseous and my wonderful doctor doesn't really care. Why would these symptoms lead to thoughts of cancer and not gluten intolerance or celiac?
Also, why am I still suffering with bloating and some pain despite not eating gluten or lactose? Some have mentioned my gut needing healing time, others that I may still be ingesting gluten or other food that is causing problems without knowing it. What I hope you can tell me is should I feel 100% better three weeks off gluten and lactose or is it common to still feel symptomatic. I felt better last week than I do this. I am discouraged and scared. I am grateful for the support you have all shared with me.

Hmmm.... doubts that someone at age 55 would suddenly become celiac??? Maybe more like suddenly started exhibiting symptoms , or worsened symptoms! Well, I worked with someone who suddenly started getting sick. He would eat his lunch and soon after, we wouldn't see him for sometimes near an hour, gone to the bathroom. He had no idea what was going on. His doctors had no idea. It took months before he was finally diagnosed with celiac disease...at age 63, just in time for retirement! I imagine his doctors thought the same thing but lo and behold, there it was!
  • 0

#134 janpell

 
janpell

    Community Member

  • Advanced Members
  • PipPipPip
  • 72 posts
 

Posted 23 January 2013 - 05:57 AM

I would definitely do a food journal. Would you try a strict elimination diet? This is how I figured out what foods don't work for me. I also tried a food sensitivity test $500 later - it was wrong:(. As much as I hate to journal my food, it was the only way. Write down everything you eat and drink, the time, take weight in the morning and night, write down any symptoms you get through the day. I would eat meals with minimal ingredients at the beginning to easier pinpoint problem foods. I would also get rid of all sugars and keep sugar forming foods way down. It's tough but nothing wrong with teaching your body proper nutrition, right? (This is what I told myself and what I still tell myself two years later - food is to nourish my body and feed my cells).
  • 0

#135 GottaSki

 
GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,096 posts
 

Posted 23 January 2013 - 06:13 AM

Strict elimination diet is the only way I finally found most of my intolerances -- had a few pass the trial during elimination. Point being when you eliminate all but a few safe foods it is much easier to determine which food is causing problems -- if you trial them at least three days - I suggest a week or more apart.

Legumes surprised the heck out of me. Peanuts had me extremely angry within a half hour and two hours after that I was in unexplained - uncontrollable tears. Peas are like sleeping pills and beans make me tired and irritable.

Until I removed all Grains, Dairy, Nightshades, Legumes, Nuts and Seeds I couldn't tell what was getting me - turns out nearly all of them were getting me. Then it took another year eating my limited "safe" foods to determine high histamine and histamine inducing foods were a big problem as those of us with destroyed villi are unable to produce the enzymes required to regulate histamine.

We are all different - the important thing is to remove problem foods to give your gut a chance to heal -- once healed you will likely get most of the eliminated foods back - with the exception of gluten.

I've typed a lot of different things here...if you have more questions...please ask.

Hang in there :)
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: