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

Can You Help Me?


stann2

Recommended Posts

stann2 Newbie

Hi Everyone,

I'm a new poster, and I'm also writing from England! I was diagnosed as a celiac 7 years ago when I was living in the U.S. I manage a strict no wheat, no gluten, no oats, rye etc. diet.

Over the last month or so, I've been having some medical problems, and I (and my doctors) are struggling to figure out what is going on. I wanted to post in case anyone had any ideas or suggestions for when I go back and see my doctor on Thursday.

I have been having pain in my lower right abdomen. It is there all the time, but it changes in its intensity... right now it's a dull ache, but it can be like a knife digging into me, or feel like I've been bruised. I've also had sharp pain at times under my left breast, and there is a twisting feeling going on there, too. I have constant watery stools, and I haven't been able to eat anything really for the last two weeks, due to nausea and also some vomiting.

The doctors have eliminated anything to do with my gallbladder, kidneys, liver, spleen, lungs. So now they are focusing on stomach and intestines.

I'm just wondering if any of you might have suffered similar symptoms at all, or have any idea what this could be. I was supposed to fly to the States on Saturday for a 3 week vacation, but I think I'm going to have to cancel :-(

Any help at all would be greatly appreciated!

Stann2 :-)


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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

More than likely you've developed a new food intolerance. It is quite common with Celiacs.

I'd start keeping a food diary - what, when, where - key in on dairy, soy, corn - those seem to be the most common. Could also be a group of foods like salicylates, amines, lectins...

Or, you're inadvertently getting gluten or got glutened and are recovering.

Have you tried a "whole food" diet - nothing processed - just meat, veggies, fruits? If symptoms lessen with that its another hint that its a food intolerance of some sort - or you're consuming too much processed food for your level of gluten sensitivity (or sensitivity in general). It seems the longer we are gluten-free the more sensitive we get. And, gluten symptoms change over time.

stann2 Newbie

More than likely you've developed a new food intolerance. It is quite common with Celiacs.

I'd start keeping a food diary - what, when, where - key in on dairy, soy, corn - those seem to be the most common. Could also be a group of foods like salicylates, amines, lectins...

Or, you're inadvertently getting gluten or got glutened and are recovering.

Have you tried a "whole food" diet - nothing processed - just meat, veggies, fruits? If symptoms lessen with that its another hint that its a food intolerance of some sort - or you're consuming too much processed food for your level of gluten sensitivity (or sensitivity in general). It seems the longer we are gluten-free the more sensitive we get. And, gluten symptoms change over time.

Thanks so much for your response. Yes, the doctor actually had me on the FODMAP diet for about 2 weeks before the symptoms got worse... that pretty much eliminated everything except fresh fruits and veg. All I have eaten in the last 3 days is soup, but even that is proving to be problematic. I have noticed over the years that I have gotten more sensitive, but I am a stickler in what I eat. I write everything down and look for trends etc.

In 7 years, I have only ever gotten glutened twice, and both times were bad enough to warrant a hospital visit, so I'm not keen on that happening any time soon! I don't even know if these current symptoms are linked, but in my world when something goes on with the stomach and intestines, wheat/gluten is the first place I go to!

Thanks again for your suggestions :-)

mushroom Proficient

Okay, let's see what's in your soup and see if that provides any clues?? :) Any new supplements or meds or toiletries? New partner? Anything different?

ravenwoodglass Mentor

Have they done stool testing to rule out any nasty food borne illnesses like Salmonella? If not ask that be done ASAP. While that should have been one of the first things they did doctors sometimes don't. I had salmonella once and had symptoms similiar to yours. The doctor just kept saying my 'IBS' (wasn't diagnosed yet) was just acting up. It was 2 weeks before I could get them to test. I got an apology and a script for an antibiotic the next day.

I hope you figure out what is causing the problem soon.

Bubba's Mom Enthusiast

I agree that it sounds like an additional food intolerance. Soy does that to me. It's in all sorts of things.

Did the broth you used for your soup have MSG or autolyzed yeast extract? They can give me trouble too.

Sometimes we know to look to our food logs for certain foods, but seasonings, spices, and additives aren't as obvious.

I hope you can get this sorted out. A hydrogen breath test might be a good idea to check for SIBO?

pricklypear1971 Community Regular

If you go through the salmonella, sibo testing and are clear I'd look at the more difficult things like food groups - sals, histamines, amines, lectins. They are tricky to figure out but can be super problematic. From what I've read by posters here they can be as bad or worse to deal with than gluten.

I have a few other food issues - preservatives, colors, msg - but for the most part are easy to identify and avoid. When you get into salicylates its hard because they are in almost all foods. And they are especially in HEALTHY foods (fruits, veggies). So you can eat tons of healthy stuff and get sicker and sicker. Same with the histamines, amines, lectins.

I certainly hope you get relief soon. Best of luck to you.


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



Celiac.com Sponsor (A8-M):



stann2 Newbie

Hi Everyone,

Thanks again for your replies.

Nothing has changed in my diet. The soup is plain butternut squash soup, made with water and a bit of salt and pepper. No new partner, no new shampoo or toothpaste.

They did do a stool sample and there was no bacteria or parasites. They did an ultrasound which came back fine, also.

I'm a bit concerned that this might be crohn's disease or ulcerative colitis... does anyone have any experience with either of these?

Thanks for your help!

stann2

pricklypear1971 Community Regular

Hi Everyone,

Thanks again for your replies.

Nothing has changed in my diet. The soup is plain butternut squash soup, made with water and a bit of salt and pepper. No new partner, no new shampoo or toothpaste.

They did do a stool sample and there was no bacteria or parasites. They did an ultrasound which came back fine, also.

I'm a bit concerned that this might be crohn's disease or ulcerative colitis... does anyone have any experience with either of these?

Thanks for your help!

stann2

Your diet wouldn't have had to change for it to be a salicylate, amine/histamine, etc. reaction. It would be a new intolerance, so to speak.

And no, I don't have experience with Crohn's /UC.

They do advise a low residue diet for Crohns-perhaps try those foods?

MariaOfColumbia Rookie

I've heard an appendix can give you trouble for quite a while before going critical. And my son had lots of nausea and vomiting before his ruptured. Surely they checked you for appendicitis, though! That's so basic.

pricklypear1971 Community Regular

I've heard an appendix can give you trouble for quite a while before going critical. And my son had lots of nausea and vomiting before his ruptured. Surely they checked you for appendicitis, though! That's so basic.

Excellent. I thought that was in his checked list but I don't see it.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,001
    • Most Online (within 30 mins)
      7,748

    Sharon AJ
    Newest Member
    Sharon AJ
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Bebygirl01
      On my Celiac journey and discovered I was also reacting to other types of gluten. The FDA in it's finite wisdom only classifies 'wheat, barley and rye' as the gluten's to be considered when a company tests for and stamps their products as gluten free. I am curious as to how many of you are aware of the other types of glutens? And another question to those on a 'traditional' gluten free diet , who are also still sick and struggling, are you also reacting to these other types of gluten as listed below? NOTE:  The new movement if you want to call it that, is now called 'grain free' and that is the true definition of gluten free. I no longer suffer with ataxia, confusion, anxiety, depression, OCD, Insomnia, ADD, acid reflux, dermatitis herpetiformis, migraines, headaches, and weight issues all due to going 'grain free'. I hope to reach as many of you out there that are still struggling and unaware of what might be setting you off such as my most recent glutening was from a vegan supplement that contained 'magnesium sterate' and 'glucose syrup' both of which are from Zien (zane) gluten at 55%. I was covered in sores that were bleeding, I was seeing squigly lines when I was trying to drive, had acid reflux, insomnia, and nightmares all from the gluten in Corn. Here are the other types of glutens that Celiacs and Gluten Intolerant people also react to: Wheat -Alpha Gliadin Gluten- 69% Rye - Secalinin gluten-30-50% Oats-Avenin gluten -16% Barley-Hordein Gluten -46-52% Millet-Panicin Gluten-40% Corn-Zien Gluten -55% Rice-Orzenin Gluten-5% Sorghum-Kafirin gluten-52% and Teff-Penniseiten Gluten 11%.
    • Scott Adams
      I just want to mention again that IF thimerosal is used in a flu vaccine the amount of ethylmercury in a single vaccine dose would be extremely small, typically around 25 micrograms (µg) or less. For context, this is much lower than the levels of methylmercury found in some seafood. Ethylmercury is metabolized and excreted from the body much faster than methylmercury. Its half-life in the blood is about 7 days, compared to methylmercury, which can persist for months. The dose of ethylmercury in vaccines is far below the threshold known to cause toxicity so would not require chelation.
    • knitty kitty
      If you have poor reactions to vaccines, preservatives, sugar alcohols and metals, you may be deficient in Thiamine Vitamin B1.  Thiamine is needed in the immune response and production of antibodies.  Thiamine can be depleted by vaccines if you are already low to begin with due to the Malabsorption of Celiac Disease.  Thiamine can be destroyed by sulfide preservatives in vaccines, which can result in the body's poor response to vaccines.  Thiamine also chelates metals which allows those metals to be removed in the feces.  Chelation removes thiamine from the body, resulting in a state of thiamine deficiency.  Sugar alcohols need to be processed through the liver using thiamine.  Again, if you're low in thiamine as many Celiac are because of the Malabsorption of celiac disease, vaccines can be a tipping point, resulting in a thiamine deficient state. High doses of Thiamine required to correct thiamine deficiency states are safe and nontoxic.  Thiamine has no toxicity level.  Thiamine and the other B vitamins need to be taken together because they interact together to sustain health.   References: https://pubmed.ncbi.nlm.nih.gov/25542071/ https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/
    • knitty kitty
      @Pasballard, Keep in mind those gluten free processed snacks are not required to have vitamins and minerals added to them to replace vitamins lost in processing like gluten containing products.   We need the eight essential B vitamins to turn those carbs into energy to fuel our bodies and make enzymes that sustain life.  Sudden weight gain (or weight loss) can be symptomatic of Thiamine Vitamin B1 deficiency.  Thiamine is the B vitamin with the shortest storage time, and so  thiamine deficiency shows up first with vague symptoms like weight gain or loss, fatigue, not sleeping well, achy or cramping muscles, digestive issues and headaches.   Taking vitamin and mineral supplements helps boost your body's ability to absorb these nutrients which keeps our bodies healthy.  B Complex vitamins and Vitamin D (which regulates inflammation) are usually low in people with Celiac disease.  Talk to your doctor and nutritionist about supplementing.
    • knitty kitty
      Welcome to the forum, @WildFlower1, Here's an article that explains about the updated gluten challenge guidelines.  Be sure to read the comments below the article. Have you been checked for nutritional deficiencies?  Low iron can affect antibody production, causing false negatives on antibody testing.  Do you currently struggle with low iron?   Low Vitamin D can cause amenorrhea, cessation of menstrual periods.   Correcting nutritional deficiencies is a big part of Celiac disease.  We don't absorb well the eight essential B vitamins and other vitamins and minerals like calcium, resulting in osteopenia, hair loss, infertility, and neurological symptoms.  Unfortunately, doctors are not given much training in nutritional deficiencies and don't recognize the connection with the malabsorption of Celiac disease. We get very frustrated here with doctors ordering us to put a harmful substance in our bodies in order for them to say "that makes you sick".   Duh, we know that already. Do try to increase your consumption of gluten for at least two weeks before retesting.  Eat the chewy kinds of breads.  Cookies and cakes don't have as much gluten in them as those chewy artisan breads and thick pizza crusts. I admire your tenacity at continuing the gluten challenge.  Do keep us posted on your progress.  We'll continue to support you on your journey to diagnosis and recovery.
×
×
  • Create New...