Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Losing Hope...
0

136 posts in this topic

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

Share this post


Link to post
Share on other sites


Ads by Google:

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites




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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

So many things going on in my head after reading the newest posts.

GI doctor doesn't think a second SIBO test is warranted at this time. I did respond to the antibiotic treatment for it.

I can't tolerate melatonin, but the tryptophan info. is something I will look into.

I haven't done a strict elimination diet. I eliminated gluten, soy and lactose but I still eat peanuts, corn-based products, beans, rice, etc.

GI has questions about me having Chrohns but hasn't done anything to test me for it. When I read about it, I don't really fit the description. I think I have big-time food intolerances. I saw an allergist yesterday and will undergo a series of tests in a month. He did blood work yesterday but that never seems to yield any info.

I don't understand why I am so bloated/gassy and really uncomfortable every time I eat and it gets worse in the evening/night. If it's irritable bowel I don't know how to treat that. I tried a fiber supplement and it made me sick.

It's amazing that you, GottaSki" were able to determine what foods made you experience different emotions. I feel like I eat almost nothing every day and I feel less and less hungry, yet still get symptomatic. I guess I really need to commit to a strict elimination diet as well as a food journal.

Some here may relate - I am sole provider and caretaker for my disabled 20 year old daughter and work full time. Finding time for "me" - to take care of me - just seems impossible.

Janpell - It's time - I have to commit to the elimination diet and food journal. I do weigh myself morning and night. Difference of 2lbs at night (higher).

Interesting note: my latest CT still shows generalized inflammation throughout GI track. No one knows why. I'm going to guess and say it's possible food allergies that have really upset my immune system as well as caused chronic inflammation.

Kim

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,375
    • Total Posts
      920,572
  • Topics

  • Posts

    • https://www.facebook.com/groups/SingaporeCeliacs/
    • Today was the big day when I went to the GI and this is the first time I have felt heard and taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a disc with records to me, which Sutter said they could not use.  We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten. He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens. I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 
    • gluten-free andee, according to an article on celiac.com  that talks about this subject see this link http://www.celiac.com/articles/24406/1/Celiac-Diease-and-Other-Autoimmune-Diseases-Equals-Low-Inflammatory-Diet/Page1.html Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet."  Note this research is two years old but hilites the problem with non-gluten rice protein that you are having. It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's. She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results. She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being."  which sounds exactly like what you are doing. If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order.  Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs.  But rarely do you hear Rice allergy's brought up in context of a gluten allergy. I am glad you are making progress on finding your triggers. Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response. I hope this is helpful. Good luck on your journey to health. Posterboy,
    • One other thing - you might be able to tolerate some dairy if it's only the FODMAPs problem. I discovered that many cheese such as cheddar have effectively no lactose. And my wife sometimes makes 24 hour yoghurt, which also has effectively no lactose. Those have been fine for my tummy.
    • Celiacs got better gluten-free. Post-war, grains became available again and the same patients got sick again. 1952 the Gluten-Free Diet is officially ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,451
    • Most Online
      1,763

    Newest Member
    Chelsealarita
    Joined