Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New Here...so Little I Can Eat These Days!

TummyTrubble

Recommended Posts

TummyTrubble Newbie
TummyTrubble
Posted

Hello! I have been lurking and reading here for quite some time but finally decided to join.

I have been suffering from digestive issues for 15 years. I've seen lots of specialists, took lots of medications, and never found a single "cause".

However, this year has been an eye opener for me. I kept having these weird bouts of horrible stomach symptoms. It was like I had drank the stomach flu. It would take me out for a week at a time. It happened 3 times before I sought a specialist. He would be the 4th gastroenterologist I have seen. Two years ago I was diagnosed with Fructose Intolerance, or Fructose Malabsorption. I didn't take it seriously and I didn't change my diet as much as I should have. The GI doc I see now is convinced that the Fruct.Mal is the main cause of these weird flare-ups. I'm not so sure, but I decided to give the fructose-free thing an honest try. This has been quite the hurdle. You don't realize just how many foods contain fructose until you can no longer have them. Bye bye fruits and most vegetables! Not to mention all condiments and almost anything that tastes good. Ugh. :(

6 months after making this change, I was still having GI symptoms. I am not lactose intolerant, but for right now, I can't seem to handle dairy, so I gave that up too. Adios, beloved cheese!!! :(

I have atypical PKU (Open Original Shared Link). Thankfully my diet for that particular ailment is not as strict as it would be if I had classic PKU. However, I still have to keep a watchful eye over my protein and phenylalanine intake. That means most sugar substitutes are out for me, too. I can't have fake sugar, but I can't have real sugar either. Dang! :(

But, I am STILL having symptoms. I am on day 20 of my gluten free trial. My mom has issues with gluten, which was my first red flag. I started suspecting gluten several months ago when I read that most people with Fruct.Mal have gluten problems, too. I realized that I had my worst stomach symptoms after breakfast and lunch. For breakfast I was eating cream of wheat and for lunch I was eating a sandwich and triscuits. When I gave up the cream of wheat and triscuits, I noticed a definite improvement. It wasn't drastic, but it was improvement. And that alone was worth its weight in gold.

After my last bout of horrible crippling stomach pain and sickness that lasted for days (although I am sick to my stomach every day, this was over the top terrible), I vowed to do whatever it takes to get my life to a place where I felt okay living it. It hadn't been there in a very very long time. As in, since I was about 13 years old. And I decided to try to give up gluten.

Honestly, it hasn't been easy, but it hasn't been as hard as I thought simply because I had to give up fructose first. When fructose went, so did breads and crackers and pasta because they all have sugar in them, too. I had already suffered the pain that came from giving that stuff up. Going from fructose free to gluten free wasn't much of a stretch, thankfully. If there's any bright side here, that's it.

But I struggle to find foods to eat. I basically survive off of white rice, chicken, potatoes (still safe, thank goodness), a little bit of pork, gluten free oatmeal (bob's red mill) and a very very minute amount of safe vegetables (right now just zucchini and cauliflower). It's a humble existence, that's for sure. I have a high stress job and as a result, I cannot afford to challenge my fructose diet at all during the week. And if I get sick, it takes me a couple of days to recover. Basically, I can try 1 new thing a week...if I don't have anything planned that weekend. It is very, very slow process and I find myself frustrated at just how little information there is out there for Fruct.Mals like myself. But I digress.

Going through all of this about killed me. Really, it did. I suffer from depression as it is and this was a real blow to me. Especially finding out that I can't eat much of the special PKU diet food that I would need to eat in order to get my phe levels low enough to have children safely. Right now, children are off the table for us. And it is because of my body's inability to process any kind of food correctly. That did NOT help the depression thing one bit.

My husband and I have a great life. It's just the two of us and our dogs and we have a lot of fun. In the evenings, we used to come home from work and get out our pots and pans and make awesome spicy authentic Mexican food and drink a home-brewed beer with the music cranked. That was our thing that we did for fun. And, sometimes, we'd go out to dinner. Or we loved to grab fast food and a movie. My entire lifestyle revolved around food. That changed as a result of my gut and I hated it. I gave up everything.

But it did help me to change my unhealthy attitude toward food. I have spent most of my life overweight and am happy (and rather startled and slight worried) to report that I've lost 70lbs in the past year. It started falling off when I gave up fast food, then more so when I gave up sweets, and just kept going. I am now finally at a healthy weight for my height, but continuing to lose more, which worries me.

There is so much to juggle with my diet that I really worry about malnutrition. My main symptom is "the big D" so I worry that I'm not absorbing enough nutrients. I supplement with the things I know I tend to be deficient in (calcium, C, D, iron and magnesium) and also take a high quality sugar and gluten free multi-vit. But I still worry.

I should mention that I have recently had the full GI work up. Everything looked great, other than confirming the Fruct.Mal diagnosis (dang) and GERD. I do have a little bit of irritated tissue at the top of my stomach, but that's it. According to my biopsies and blood work, I do not have celiac disease. But I am confident that I can still be gluten sensitive.

Right now, according to my various diets, I cannot have very much protein (PKU), fruits or (many) vegetables or sweets (Fruct.Mal), dairy (?!), or anything containing gluten. I also try to stay away from artificial colors and preservatives, but that definitely is at the bottom of the list. It is a struggle to find ANYTHING to eat these days. It's very difficult.

I suppose that I've joined this forum to look for other people who are dealing with the same (or similar) combination of weird, competing diets that I am. Maybe you guys will have some suggestions for me....foods to try or things to do. Or, just as good, maybe I can find some people who have had to live through the same challenges that I have been dealing with. My family tries to understand, but they don't. How could you unless you've been there? How could you ever know what it's like to look at food and really have to think hard about whether or not you should eat simply because you KNOW it will make you sick for some reason..unless you've been there? I know many of you know what it's like to wonder if it's easier to just NOT eat before an important event or big day simply because it's easier to be hungry than it is to be sick. And I know many of you know what it's like to look at your SO's food and drool and feel so sad....wondering if you will ever be able to eat anything good ever again.

I know that many of you know exactly what I'm feeling right now.

Looking forward to getting to know you all. :)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Newtoitall Enthusiast
Newtoitall
Posted

Lesson 1. Shorter posts, I think about 80% of the people on here have a.d.d

on another note, welcome offically!

p.s I can't read the post because I'm not fully healed and I'm paranoid xD

I might start assuming somethings wrong with me ! =O

but srsly, good luck with that, I know it's a beeeetch

georgie Enthusiast
georgie
Posted

Hi , Sounds like you have a few things happening there. Are you FODMAP ? Open Original Shared Link I am not sure what FrucMal is ...but if you are FODMAP then you need to see a good dietician to explain it. I think Sue Shepherd does skype consults still. You have mentioned afew things that suggests you need this help. For eg - the fruits of FODMAP can be eaten. It is all about balance and quantity. Did you know you can eat glucose with the danger fruits to balance out the fructose molecule. Have you considered onions ?They are a major FODMAP intolerance for a lot of people. Not all fruits and vegetables have the same load either.. You talk of lactose intolerance and giving up cheese. No need for that. Hard cheese has very little lactose as does butter, cream and greek yoghurt. You mention the wheat but are you totally gluten-free ?What about barley, rye, oats.. I react to corn and sorghum too. Have you been tested for Celiac ? I am FODMAP as well as Coeliac and lactose intolerant and have a great diet. Schar pasta is brilliant and why can't you eat Mexican? Almond flour baking is easy and stores well. Hubbie and have risottos, asian stir fries, fried rice,pasta meals, all the time. Lots of variety. No need to go without..

georgie Enthusiast
georgie
Posted

This link explains how to reintroduce foods...Open Original Shared Link

TummyTrubble Newbie
TummyTrubble
Posted
  • Author

ADD....got it. Good to know. I do tend to babble. I'll see if I can keep this one a bit shorter. ;)

Yes, I've been tested for celiac. Negative.

I'm not lactose intolerant - was just tested 2 months ago. For some reason cheese and milk tend to make me very sick, very fast. I do fine with butter.

FructMal is my shorthand term for Fructose Malabsorption, not to be confused with hereditary fructose intolerance, which is far more serious.

I haven't eaten onions in ages. They are high in fructose.

The FODMAP diet intrigues me and I have read a lot about it. I abide by it and then some - am a bit more careful about fruits and vegetables than it requires.

As for gluten free, I think I'm doing pretty well for now. I eat oats, but they are Bob's Red Mill gluten free oats....supposed to be free of any cross-contamination.

Doc took me off corn when I was diagnosed with Fruct.Mal. I don't eat any breads, crackers, pasta or anything that would contain flour of any type.

I do miss pasta, but most of the gluten free pasta I've found is made of brown rice, which is off limits for Fruct.Mals (depending on who you listen to).

My beloved Mexican food got the heave-ho for a few reasons. First, I can't have tomatoes. Second, red spices like paprika and chili powder are extremely high in fructose. That stuff absolutely KILLS me now. I'm talking about severe, crippling pain for 4 or 5 days. It's just not worth it. Mexican food kind of sucks without tortillas or taco shells. Or cheese. Or spice.

I have been practicing taking Dextrose with questionable things to help myself digest excess fructose. I use Smarties. They seem to work fine and taste good doing it. They are, so far, the only sweet thing I can tolerate.

I am seeing a nutritionist at the end of the month for PKU related stuff. I'm hoping they will be able to refer me to someone who is familiar with Fruct.Mal and gluten issues.

Thanks for the links and the welcome!

mushroom Proficient
mushroom
Posted
Mexican food kind of sucks without tortillas or taco shells. Or cheese. Or spice.

Ain't that the truth!!! (and without the tomato!! ) Not worth going in the door :lol: Same goes for me with Thai and Chinese :rolleyes: and Indian :blink:

TummyTrubble Newbie
TummyTrubble
Posted
  • Author

Ain't that the truth!!! (and without the tomato!! ) Not worth going in the door :lol: Same goes for me with Thai and Chinese :rolleyes: and Indian :blink:

I know.

I never was a fan of tomatoes themselves, but I sure loved LOTS of things they're in. Like salsa and ketchup. Oh, and the fantastic fajitas that this nearby little hole in the wall Mexican place makes. Food that good should be illegal. Unluckily for me, now, it may as well be. :huh:

I miss Chinese food, too. I guess I can still eat rice. That's the same thing, right?

D'oh!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,455
    • Most Online (within 30 mins)
      7,748
    Zpayt
    Newest Member
    Zpayt
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      I think a UTI caused by Aspirin, made me a Celiac

      By trents · Posted

      Welcome to the forum, @jimmydee! Celiac disease is an autoimmune disorder, meaning the consumption of gluten triggers a response by the immune system that causes the body to attack it's own tissue. Celiac disease has a genetic base that requires some kind of trigger for the genes to be turned on. We know that there are two primary genes responsible for providing the potential to develop celiac disease and we know that about 40% of the population carries one or both of these genes. However, only about 1% of the population actually develops celiac disease. So, that tells us that something more than just having the genes is necessary in order to develop celiac disease. Something must trigger those genes to wake up and produce the active disease. It's that "something" that we are struggling to understand and that is somewhat of a mystery. But there is a growing body of evidence pointing to the culprit being a disruption of the proper balance of microorganisms in the gut. Apparently, the microorganisms that live in our intestines produce chemicals that regulate the size of the openings in the mucous lining of our small bowel. A disruption in the healthy balance of this microorganic community causes an increase in the size of the openings in the mucous lining. This in turn allows protein fragments from the food we eat that are larger than normal to invade the mucous lining where they are detected as threats by the immune system. This is what is happening with gluten for those with celiac disease. The attack in the mucous lining of the small bowel by the immune system on these incompletely broken down gluten components causes inflammation and, over time, as we continue to consume gluten, it damages the mucosal lining of the small bowel which results in the loss of efficiency of nutrient absorption. This mucosal lining is made up of millions of tiny finger like projections that create an enormous surface area for the absorption of nutrients when healthy. The "wearing down" of these millions of finger-like projections due to celiac inflammation greatly reduces the surface area and thus the ability to absorb nutrients. This in turn typically results in numerous health issues that have a nutrient deficiency base. But the answer to the question of why there seems to be an epidemic of celiac disease in recent years may not be simple. It may have many facets. First, we don't know how much of this epidemic is real and how much is apparent. That is, how much of what we perceive of as a dramatic increase in the incidence of celiac disease is simply due to greater awareness and better detection methods? Celiac disease is not new. There is evidence from ancient writings that people suffered from it back then but they did not have a name for it. And it wasn't until WW2 that gluten was identified as the cause of celiac disease. Current thinking on what is causing imbalance in gut biology has put forth a number of causes including overuse of antibiotics and pesticides, environmental toxins, fluoridation of drinking water, preoccupation with hygiene and sanitation, and the western diet. https://www.celiac.com/celiac-disease/theories-on-the-growing-prevalence-of-celiac-disease-and-gluten-sensitivity-over-the-last-half-century-video-r6716/?tab=comments#comment-25345 All this to say that I doubt your UTI or the low dose aspirin had anything to do with the onset of your celiac disease. It was probably just coincidence unless the UTI was the stress trigger that activated the celiac potential genes. But what is interesting about your low dose aspirin theory is that aspirin is in a class of medications known as NSAIDs (Non Steroidal Anti Inflammatory Drugs). Scientific studies have shown that long term use of NSAIDs can damage the villous lining of the small bowel in the same way as celiac disease.  The other thing I wish to point out is that unless you have actual testing done for celiac disease, you can't be sure if you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms, the difference being that NCGS doesn't damage the lining of the small bowel. There is no test for NCGS, celiac disease must first be ruled out. NCGS is 10x more common than celiac disease. The antidote for both is a gluten free diet.
    • julie falco
      NEED TO READ ALL LABELS (FRONT & BACK)

      By julie falco · Posted

      BRAND NAME: NOT BURGER PLANT-BASED PATTIES  A product I came across labeled gluten-free bought it when I got home I read the back ingredients further to notice that it says gluten with a line going through it u will see in the attached pics.     The label says down below that it is processed in a facility that also processes "WHEAT".  I tried to put this on the Gov. website as false advertisement but couldn't do it.  Maybe on here at least the word can get out to others not to purchase anything gluten-free without throughly reading the whole label....It won't let me upload 2 pics.  says to contact manager.   The products name is Not Burger    INGREDIENTS: Water, Pea Protein, Coconut Oil, Sunflower Oil, Natural Flavors, Bamboo Fiber, Less than 2% of: Methylcellulose, Dried Yeast, Rice Protein, Salt, Cocoa Powder Processed with Alkali, Psyllium Husk, Potato Fiber, Red Beet Juice Powder (color), Chia Protein Concentrate, Spinach Powder.   Manufactured in a facility that also processes wheat and soy.          MANUFACTURED FOR: The NotCompany, Inc, 438    Treat Avenue, San Francisco, CA 94110.
    • jimmydee
      I think a UTI caused by Aspirin, made me a Celiac

      By jimmydee · Posted

      Let me start by saying that I am self- diagnosed Celiac. I didn't want to pay for tests, because I don't have health insurance and the doctor said I would HAVE to eat gluten for the tests and I am afraid it will kill me. I diagnosed myself by quitting dairy, sugar and gluten for a couple weeks and figured out the problem by process of elimination.  ANYWAYS.......here's why I blame "Aspirin low dose safety coated" for my Celiac Disease.  I started taking regular Aspirin for a couple weeks for back pain and decided to switch to low dose safety coated Aspirin because I thought a smaller dose was safer for regular use. Well about 3 days after starting low dose safety coated aspirin, I got a terrible UTI. I didn't know what to do (should have gone to doctor) I started taking cranberry pills and read Aspirin can cause UTIs, so stopped taking that. A week later, the UTI was getting worse but then my Dad gave me some probiotic pills and the next day I felt better, so I took those for a week and the UTI was gone. About a week later, I bought my family cake and pizza for a birthday party. I ate a whole bunch and there was some leftover the next day, so I ate a bunch again. Welp, that was my first Gluten attack. I was home alone and almost called an ambulance, my stomach was so full of gas I couldn't breathe, I was covered in sweat and thought I was having a heart attack.  Since quitting Gluten I haven't had the "gas attacks" or had the awful constipation that lasts 3 days. So I'm certain I'm Celiac and I absolutely blame low dose safety coated Aspirin, I think it's the time release binder that is the problem, because I was fine with regular aspirin, I was just breaking those into halves or quarters. Actually now that I think about it I may have even used the regular aspirin at other times in my life before that, just not the little low dose safety coated Aspirin, that's what I think caused it. What's weird is my Dad took the low dose safety coated Aspirin for years and years, for it's reported heart benefits, and he never got Celiac.  Anyways, I felt this was important to share, so they can find the cause of this disease, which seems to be affecting more people than ever before. At least Gluten Free Pizza exists, that's been my new staple food in my diet.         
    • knitty kitty
      Getting rid of the belly bloat

      By knitty kitty · Posted

      Welcome to the forum, @Karen Chakerian, We need more information, please.   What homeopathic remedies or medications are you taking now?  Do you still have the blood pressure and other symptoms?  What is included in your diet currently?  Dairy? Oats?  Processed gluten free foods?  Vegetarian?  Other food allergies?  Do you take vitamins?  When gluten is removed from the diet, the body stops making the anti-gluten antibodies that are usually measured in blood tests used to diagnose Celiac disease.  To measure the anti-gluten antibodies, you would have to consume 10 grams of gluten (4-6 slices of bread or equivalent) per day for a minimum of 2 weeks or longer.   A DNA test which looks for the most common genes for Celiac Disease may be a less invasive avenue to pursue.  Has your doctor checked you for nutritional deficiencies? Glad you're here!
    • knitty kitty
      Dangerously underweight, Perfect gluten free and insomnia

      By knitty kitty · Posted

      @SaiP, Insomnia is listed as one of the side effects of Loratadine.   Niacin B3 in the form Tryptophan, Pyridoxine B 6, Folate B 9, Cobalamine B12, Magnesium, and Thiamine B 1 are needed to produce the sleep hormone melatonin.  Insomnia can also be caused by low Vitamin D and low Vitamin A.   A strict gluten free diet can be low in essential  vitamins.   Gluten containing products are required to replace vitamins lost in processing and milling.  Gluten free processed foods are not required to have vitamins added.  White rice is not a good source of B vitamins.  Brown rice is little better.  Exposure to light (even grocery store lights) and heat (during transportation) can destroy B vitamins.   B vitamins are easily lost in urine and diarrhea because they are water soluble.  If you have had diarrhea longer than two weeks, you are probably low in B vitamins.  Fat based vitamins, like Vitamins D and A, can be low due to fat malabsorption in Celiac disease, too.   Damaged villa in Celiac Disease do not absorb B vitamins and fat based vitamins and minerals well.  Supplementing with essential nutrients while villi heal boosts the ability to absorb essential vitamins and minerals.  Vitamins are stored and utilized inside cells.  Blood levels are not accurate measurements of vitamin deficiencies.  You can have normal blood levels while having deficiencies inside cells.  The brain orders cells to release their stores so the brain and heart can keep functioning.  This results in normal blood levels, but vitamin deficits inside cells.   Your indulgence in a little bit of bread is providing some, but insufficient amounts, of vitamins needed to make sleep hormone melatonin while keeping your inflammation and histamine production high.   In addition to a B Complex, I took 1000 mg of tryptophan before bed to correct my insomnia caused by high histamine levels.  Correcting my Vitamin D level to between 75-100 nmol/ml helped as well.  Also Passion flower extract is helpful in falling asleep quickly.   Please stop eating gluten bread as this will keep your autoimmune response triggering and your antibody levels won't go down and your histamine levels will stay up as well.   Celiac is a marathon, not a sprint.  P.S. I wanted to reiterate that insomnia and weight loss are symptoms of Thiamine deficiency.  Benfotiamine is a form of thiamine that promotes intestinal healing.  Thiamine is water soluble and nontoxic even in high doses.  High doses are needed to correct thiamine deficiency. All mitochondria in cells utilize thiamine.  The World Health Organization says to take 500 - 1000 mg per day of thiamine and look for health improvement.  Diets that are high in carbohydrates like rice and gluten require more thiamine.  For every 1000 calories from carbohydrates, we need 500 mg more thiamine.  Thiamine is found in meat.  Few veggies contain thiamine. Can you rise from a squat without assistance?  This is the field test for thiamine deficiency used by WHO.  If you cannot rise easily from a squat you may be thiamine deficient.
×
×
  • Create New...