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

Unstable Immune System? -Vent Alert-


MsMissy

Recommended Posts

MsMissy Newbie

I was wondering if anyone else out there has what my Doc refers to as an "unstable immune system"? I develop new alleries all the time, it used to be once every few years, but when Celiac first stared to set in about 5 years ago (it took me that long and a new doctor to get a diagnosis...scary) I started developing new sensitivities left and right. my list of food issues alone is up to nearly a dozen and im only 30! If this keeps up im going to starve to death at some point. (im well on my way, ive lost over 75lbs since last March.)

my food no no list is as follows:

Sheep/ Lamb (huge no no no...i cant even put the meat in my moth without getting hives on my lips and my tongue swelling.)

Nightshades (tomatoes, potatoes, eggplant, goji berries, peppers, wolf berries, tobacco, tomallaios- tree tomatoes, etc)

Soy

Pine Nuts

all melons and cucumbers (i actually got sick till i spit up blood!)

Wheat, rye, and all the gluten stuff of course

Yeast (my face swells)

Blue Cheese, Xanthian Gum, non-animal rennet and anything else made from Mold

Eggs (they give me chest pain)

Peanuts (severe nausea...even from just the smell, but thankfully not anaphalaxctic....yet)

i have had some issues with other red meat, but only to grain feed beef.. so im guessing its the grain they eat causing it.

Milk im ok with if i stick to Highland, for some reason the off brands give me really bad indigestion, im guessing the reason is the same as above.

Is anyone else out there having to deal with something like this???

my big question is...what do i eat now?

and what food will go on the no-no list next?

and when will that food decide to turn on me?

(will it be totally out of the blue, like melons this summer? and the Yeast this fall?)

currently the rest of my household is eating "normally" minus the nightshades, my girls are allergic to them too.

Im washing my hands and my dishes like mad but sometimes that still dosent make me feel "safe" i feel like im playing Russian roulette with my food...every meal, every day.

My anxiety level is though the roof!!!

(and the hubby wonders why i have no libido anymore...sorry John, it starved to death!)


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Lots of us discover additional intolerances after we eliminate gluten - it seems that gluten overrides the response to the others. And some of us continue to develop additional ones, which gets to be a real PITA. I'm right with you on the nightshades, soy, peanuts. Fortunately, I discovered two things: 1. all my intolerant foods had a high lectin content. 2. My gut was still leakiing and allowing molecules that were too large to leak through the intestinal lining into the blood stream, where my autoimmune system identified them as non-self and set off an inflammatory attack on my body. If this food was a lectin I had a worse response and then even the smallest trace, just like a crumb of gluten, would set me off. Once I identified all my trigger lectins and eliminated them, I have had a pretty stable immune system for the last 19 months, i.e., no more intolerances have developed and I have been very healthy, except when I don't keep careful track of my electrolytes :o which got me into a spot of bother last summer. I have been taking a very strong probiotic VSL#3, and other supplements, and I still take digestive enzymes because my pancreas isn't doing a very good job at producing them. But I have even found that some things my husband has cooked for me have contained small amounts of corn and of soy, and I have not reacted, so that is a positive sign that maybe this process can be put into reverse and that instead of adding new intolerances we can start getting rid of old ones. But I think making sure we don't have leaky gut syndrome is the first step in not developing new intolerances.

julandjo Explorer

I have no advice for you; I just wanted to say that I'm in the exact same boat. Like you, I've been happy to lose weight and for the first time in my life I'm at a very healthy weight. But new intolerances keep cropping up. At this point I'm down to 7 safe foods and weight is rapidly dropping off of me. I'm quite nervous about it. My doctor is too so I'm having another endoscopy this week... we'll see. Hang in there - you're not alone!

jenngolightly Contributor

Is anyone else out there having to deal with something like this???

my big question is...what do i eat now?

and what food will go on the no-no list next?

and when will that food decide to turn on me?

(will it be totally out of the blue, like melons this summer? and the Yeast this fall?)

currently the rest of my household is eating "normally" minus the nightshades, my girls are allergic to them too.

Im washing my hands and my dishes like mad but sometimes that still dosent make me feel "safe" i feel like im playing Russian roulette with my food...every meal, every day.

My anxiety level is though the roof!!!

(and the hubby wonders why i have no libido anymore...sorry John, it starved to death!)

Sure! I know how you feel. You'll soon learn to eat things that you didn't know existed before. That's where I am now. It's kind of a game for me after 9 months of this ultra-restrictive diet I've started. I can't eat sugar, dairy, corn, soy, any grains, gluten (of course), starchy veggies, and I'm allergic to nuts. I think that's it... I'm also allergic to strawberries, some hard cheeses, pineapples... Whatever...

But I've run into some interesting things that I never tried - and I'm 40 yo. I've always been a really picky eater and I never liked meat, squash, mushy foods. So it's been a challenge. New foods include fishes, lamb, homemade yogurt that I can turn into just about any sauce that I need, pork, squash, tomato, all lettuce, fennel, interesting spices, pure butter, apple cider, blueberries, etc. I've learned about a lot of recipe websites that have ingredients I can eat, and I've learned to substitute foods that I can't eat, with those I can eat.

It's really, really, really hard in the beginning and I cried a lot. But there are thousands of foods that you've never tasted and you're sure to run into some you like.

T.H. Community Regular

I just saw an article about something like this the other day - the theory was the leaky gut was making it so that you continually develop more and more food allergies. Every time you start eating more of a food, it gets through your 'leaky gut' more, enters your blood stream, and you start reacting to that, too.

I don't know much about it - just read it for interest but haven't looked at it further. Here's a link an article on it, though, in case it helps. :-)

Open Original Shared Link

MsMissy Newbie

I just saw an article about something like this the other day - the theory was the leaky gut was making it so that you continually develop more and more food allergies. Every time you start eating more of a food, it gets through your 'leaky gut' more, enters your blood stream, and you start reacting to that, too.

I don't know much about it - just read it for interest but haven't looked at it further. Here's a link an article on it, though, in case it helps. :-)

Open Original Shared Link

Thanx, its a direction i haven't really explored before. ill mention it to my doc next time i see her.

mushroom Proficient

Thanx, its a direction i haven't really explored before. ill mention it to my doc next time i see her.

I agree with Shauna that healing the leaky gut is the first priority, because until it stops leaking more and more foods can cross into the bloodstream and create further intolerances. Anything you eat a lot of has a greater chance of becoming an intolerance until your gut stops leaking. Most of us take probiotics, some of us take L-glutamine, to heal our leaky guts. And we all need to get blood testing to find our nutritional deficiencies from malabsorption and supplement those things we are low in so that we can heal quicker.


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



Celiac.com Sponsor (A8-M):



T.H. Community Regular

It just occurred to me: how much help are you getting in avoiding these foods that are getting you? Without aid in finding all the potential hidden sources of these foods, I think it might be pretty easy to be getting small amounts from contamination.

The yeast is what got me thinking. I just had a talk with a friend who has yeast issues. She's had them for over 20 years now , so she had to find out on her own a lot of this stuff, and she's collected a lot of info. She gets yeast infections of the skin and blood when she gets yeast, and her skin literally cracks open. :blink:

The things she had to look out for just amazed me. Like all vinegars - which I should have thought of, because I know yeast is added, but I'd never think about it. But she also had trouble with food from certain areas of the world, because different places have higher natural yeast concentration! I guess California produce, for example, is typically higher in natural yeast, to the point that it can bother some yeast-sensitive folks.

If you were not given a good source of information on hidden places these problem foods could be, perhaps some blogging allergy-sufferers or other informational sources would be of use in completely eliminating your bad foods.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,875
    • Most Online (within 30 mins)
      7,748

    Wendy Jackson
    Newest Member
    Wendy Jackson
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.3k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Thanks for sharing, Karen. Certainly a needed reminder what we already knew (and I've posted many times on this forum) but sometimes forget, namely, autoimmune disorders tend to cluster. Where one is found, you can look for others to show up eventually. The thing that is unusual in your son's case is the onset of several of them at such a young age. My sister in law, who is in her early 60's has Crohn's and struggles with constipation so I don't think that is unusual with Crohn's. If nothing else, it's the outcome of not eating much because of the pain. Now that you know what is going on with your son and the Crohn's, we hope he is beginning to improve.
    • Nathan.
      Hi there. My son is turning 16 this month. He had an endoscopy and biopsy to confirm celiac. He went gluten-free and his pain never got any better. I think it got worse. Months went by. The pain started around 7th grade. He missed a lot of school in 8th grade, and a whole lot in 9th grade. He couldn't go to school in 10th grade. All along the gastroenterologist prescribed Hyoscyamine, didn't help at all. Cyproheptadine, no less pain. Peppermint oil, ginger, Miralax, Senna. Doc said he was constipated, but I couldn't get him to have Miralax daily. Eventually he went on Linzess and no senna or Miralax. Sorry this is long, there will be a point.  We gave his school not just a doctors not, but everything, and U of M makes a lot of notes. They still turned us in for Truancy.  I didn't get him enrolled in online school fast enough.  The school would not recommend an online school and i didn't know which one to choose.  Doc thought it was nerve pain and mental. He recommended the u of m my pain program.  Nathan did so good, 3 days a week supposed to be for 4 weeks.  Never missed, always on time.   After two weeks, they discharged him. Said it was not  benefitting him.  Pain went on. I had been asking if there were any other test they could do. Ultrasound, colonoscopy. Doc said we can do it, but I don't think we'll find anything.  Finally he had a colonoscopy and another endoscopy.  Guess what, they did find something. They found a ton of tiny ulcers everywhere, from the esophagus to his rectum. They think Crohn's. I understand they didn't check for that because he was more constipated, not much diarrhea. He is getting an MRI with contrast on Sunday. Also they want him to do a cal-protectin (give a poop sample). Then an appointment on the 16th to talk about treatment. Then the probation officer on the 17th. In the meantime he is taking Budesonide extended release.  $276.00 for 30 pills, and that's with insurance. Also he was diagnosed with hyperthyroidism, Graves disease a few months ago. If it is for sure Crohn's,  it will be three autoimmune diseases. If someone is gluten-free for a month or more, and the pain is no better, don't stop looking. I was beside myself. Did they think he was exaggerating, lying? I was considering taking him to a holistic doctor, who would probably recommend Peppermint oil and ginger.  He's such a good kid. Kind of an introvert. He was on the 9th grade soccer team. He would try to go to practice and kept having to stop, the pain was that bad. Every time he ate, it didn't matter what, gluten-free chicken tenders, mac and cheese, pizza, ice cream, all gluten-free, he would eat a normal amount but stop and say, I can't eat anymore, my stomach hurts.  If anyone reads all this, thank you. I had a gut feeling, no pun intended, that he had an additional problem. They found celiac and stopped looking. If you don't feel better, keep on your doctor to check further, keep looking.   Take care, Karen  
    • Scott Adams
      Most likely cross-contamination I believe.
    • cristiana
      I think it takes different people different amounts of time, but in my own case I had pain,  bloating and loose stools for some time, exacerbated by a lactose intolerance, which eventually went.  I would say the really bad diarrhea got better quite quickly, but the bloating pain carried on for a few months, until I was told to give up lactose for a few weeks.  That helped enormously and once I realised milk and yoghurt was the cause, after a short break I went back to lactose very gradually and felt a lot better.  Now I can tolerate it well. From Coeliac UK "The enzyme lactase is found in the brush border of the small intestine. This is why people with coeliac disease can be deficient in lactase at diagnosis. Once established on a gluten free diet, the gut is able to heal and lactose digestion returns to normal. Lactose intolerance is therefore usually temporary." So if this helps your daughter, this doesn't mean you have to give up lactose forever, especially as dairy is such a good source of calcium for growing kids.   Bear in mind you should be able to reintroduce it. As for fatigue, this can be due to vitamin and mineral deficiencies,such as iron, vitamin D and B12.  Were these levels tested?  If not, I would suggest you get them done.  If your daughter is deficient in these, it is vital you address the deficiencies, and get the tests redone in a few months, particularly the iron, because too much can be dangerous.
    • knitty kitty
      Hello,   The medication in these inhalers can cause a thiamine deficiency if used by someone already low in thiamine.  We don't absorb sufficient amounts of vitamins and minerals due to the inflammation and damage done to our villi in Celiac Disease.  Even a long term strict gluten free diet may not provide sufficient amounts of vitamins and minerals.  There are eight B vitamins that all work together.  Thiamine deficiency often shows up first because our bodies use so much of it and it can't be stored very long. Thiamine deficiency symptoms can appear in as little as three days.  Without thiamine, the other B vitamins may not be able to function properly.   Thiamine is needed to clear lactic acid accumulation caused by the inhalers: Shoshin beriberi provoked by the inhalation of salbutamol https://pubmed.ncbi.nlm.nih.gov/12951730/    Significant Lactic Acidosis from Albuterol https://pmc.ncbi.nlm.nih.gov/articles/PMC5965110/ Albuterol-Induced Type B Lactic Acidosis: Not an Uncommon Finding https://pmc.ncbi.nlm.nih.gov/articles/PMC7263006/ Lessons of the month 1: Salbutamol induced lactic acidosis: clinically recognised but often forgotten https://pmc.ncbi.nlm.nih.gov/articles/PMC6964186/ An Overview of Type B Lactic Acidosis Due to Thiamine (B1) Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC10731935/   Thiamine has antifungal and antibacterial properties.  Thiamine helps keep Candida in check.  Thiamine helps keep SIBO in check.  Thiamine helps with black mold, Aspergillis infection.  Riboflavin helps fight Candida infection in the mouth. Riboflavin Targets the Cellular Metabolic and Ribosomal Pathways of Candida albicans In Vitro and Exhibits Efficacy against Oropharyngeal Candidiasis https://pubmed.ncbi.nlm.nih.gov/36625571/   Thiamine deficiency can make ones voice hoarse and can cause localized edema.  Niacin deficiency can make ones voice hoarse.  (Niacin deficiency and Thiamine deficiency can each cause irritability, agitation, and lability.) Hoarseness in pellagra https://pubmed.ncbi.nlm.nih.gov/21507655/ Hidden Hunger: A Pellagra Case Report https://pmc.ncbi.nlm.nih.gov/articles/PMC8152714/   Anesthesia can cause B12 deficiency.  B12 deficiency can show up as mouth sores and geographic tongue, diarrhea, and dementia. Vitamin deficiency, a neglected risk factor for post-anesthesia complications: a systematic review https://pmc.ncbi.nlm.nih.gov/articles/PMC11823251/ Neurologic degeneration associated with nitrous oxide anesthesia in patients with vitamin B12 deficiency https://pubmed.ncbi.nlm.nih.gov/8250714/ Subacute combined degeneration of the spinal cord following nitrous oxide anesthesia: A systematic review of cases https://pubmed.ncbi.nlm.nih.gov/30144777/ The Effect of Vitamin B12 Infusion on Prevention of Nitrous Oxide-induced Homocysteine Increase: A Double-blind Randomized Controlled Trial https://pmc.ncbi.nlm.nih.gov/articles/PMC4052402/     Eating a diet that is heavy in carbohydrates can precipitate a thiamine deficiency.  As the amount of carbohydrates consumed increases, additional thiamine is needed, otherwise the carbs will be stored as fat.   Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/   The deficiency symptoms of some of the B vitamins cause gastrointestinal symptoms that resemble the same symptoms as when being glutened.   Thiamine deficiency can present as vomiting, diarrhea and abdominal pain (Gastrointestinal Beriberi).  Niacin deficiency can present as diarrhea (Pellagra = diarrhea, dermatitis, dementia, then death ).  B12 deficiency can present as diarrhea or dementia.  Not everything is caused by hidden gluten.  Gluten free processed foods are not required to be enriched with vitamins lost in processing like gluten containing foods are. Blood tests are not accurate measurements of vitamin levels, but do talk to your doctor and nutritionist about supplementing with the eight B vitamins, Vitamin C, the four fat soluble vitamins and minerals like magnesium.  Your physician can give you a shot of B12 before anesthesia administration.   By the way, Celiac Disease genes have been traced back to having originated in Neanderthals.  I'm not a singing teacher on the net.  I earned a degree in Microbiology after studying nutrition because I wanted to know what vitamins are doing inside the body.  I've experienced nutritional deficiencies myself. Hope this helps!  Keep us posted on your progress!
×
×
  • Create New...