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Losing Hope...
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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.

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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.

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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.

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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

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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!

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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.

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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.

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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!

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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).

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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 :)

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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

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    • When it's that high, it almost always means Celiac.  Sure, you can have Crohns, too.  Just like you can have Celiac and diabetes, the common cold or a hang nail.  I wouldn't jump to Chrohns.  I don't think the tTg really has anything to do with Chrohns?  Where did you see that?  Sometimes, a slightly elevate tTg can be elevated from other issues, but >100 is not a " slightly elevated" reading
    • Hi! I'm new here, and I'm looking for some information because I'm having a hard time finding it.  Over Labor Day weekend I got some kind of intestinal bug. I didn't think much of it until the D persisted once a day up til now. I tried a priobiotic but that didn't help much. I have bad anxiety and began to think that I was just anxious and stressed. No fever, no pain, all bloodwork is normal, so no infection or anemia. My mother has 5 siblings and 3 have celiac. One other one had a high result on a blood test but was never officially diagnosed and insists she doesn't have it. So I went to my local health fair and got the ttg-iga test, just in case. My result came back at >100. So I have called and scheduled a visit with a GI for next week. Aside from the recent intestinal issues I have never thought that I had any signs of celiac. I do have dermatographism and have had that since I was 20 (I am 28). I have severe anxiety. I had PUPPPS when I was pregnant with my daughter and it was miserable. It looks much like the skin rashes that celiacs have. Again, didn't think much of it. Because of my anxiety I am terrified that this high blood test is from something else, like crohn's. I don't have diabetes, my liver and thyroid numbers are fine. I think it's much more plausible that this is celiac because of my family history. But my anxiety says "what if it's crohns?" Does anyone have any insight? Is it true that the ttg iga can be elevated from crohns and not celiac? Is >100 pretty definitive of celiac? I didn't know if crohns was the cause if the number would be this high.  I'm just freaked out. 
    • This does say it is for NCGS....so not  for Celiacs.  There is a drug being developed that may actually break down the gluten in the stomach before it hits the intestines.  However, that is still in clinical trials.
    • could be from your neck, or it is, literally, in your head. perhaps a scan is needed.
    • The anxiety thing is there I take teas, and supplements along with CBD oil to help with it, and long walks and exercise when I get antsy. As for the human interaction it is a mix of other mental issues, and the way I feel about people who can eat gluten. If they are not eating I have no issue talking with people. I mentioned I have issues accepting them as the same species when I see them eating. My reaction to gluten is so ingrained in me that it is not a food but a poison, that watching others eat it causes a subconscious reaction where I find myself avoiding them and looking down on them like something from another planet. I end up disgusted with them and walking away, I will go out of my way to avoid people and places where foods like this are present. This is my TRAUMA part of the gluten exposure, and one of the big things I am trying to address in my life right now. I know it is irrational to do so but I end up doing it, I have never cared about others race, religion, or looks, but if I see them eating a gluten/poison, it somehow changes how I perceive them and interact with them and I hate this part about me. It is taking a lot of mental effort to try to smile and treat them as a human, and not something to be looked down upon in disgust. I just recall that mental state that gluten puts me in with my mind and body turning against me and not doing what I will it and the fear comes back. This diet is pretty much like mine, I take Doctors best Magnesium powder in a tea that is actually brewed with st johns wort (never thought much of it) , I use Liquid Health Stress & Energy along with the Neurologic Support they have, twice-three times a day for B vitamins(along with a bunch of other supplements) . I can not digest meats or carbs well, meats it is a issue with breaking them down same with egg yolks, I literally just burp up the undigested meats hours later. I have found the only way to eat them is to boil/slow cook them til they melt then blend them into a broth and have it with digestive enzymes so only do it with turkey bacon, longhorn, and salmon in small amounts in soups or for flavoring stock for stir frys.  As for Carbs like rice and potatoes I end up getting really gassy and bloated, same with sugars in any amount greater then like the size of my thumb give or take. Oats I only have gluten-free Harvest in about a tbsp amount when tasting recipes of stuff I sell at farmers markets. So I eat mostly fats and protein from egg whites, nuts, seeds, veggies, and vegan protein powders blends balanced for complete proteins. I have at least 1-2 dried fig, dates, handful of banana chips, or a 1/4 of a small fruit with meals for fruits.  My meals are mostly egg white and veggie omelettes, stir frys, and soups, Always with lots of fats and proteins in each meal. I have found having nutritional yeast to help with my mood and energy levels also and find someway of having it in meals often. I keep my foods on rotation and keep getting updated feed back on ratios with my dietician. I also have a rather odd list of foods I can not eat due to allergies/intolerance.
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