Jump to content

  • 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

Other Food Intolerances!

mela14

By mela14
in Related Issues & Disorders

Recommended Posts

mela14 Enthusiast
mela14
Posted

Hi huys,

It's been a while. I've been doing better with avoiding gluten and actually have not had any gluten incidents. My bladder has kept me aways from here though and I am stuggling with Interstitial Cystitis and the diet for that!

As my diet seems to get more and more restricted I find it harder to discipline myself ALL THE TIME! last night I had some cake frosting that my dad made for his cake. It was soooooooo good. I was up sick all night! I know that I am dairy intolerant as well as soy and eggs but thought a little bit wouldn't hurt. Boy, was I wrong. I was up all night with stomach bloating, pain, sweating, and muscle pain. This morning I am still out of it and weak and dizzy. It was NOT worth it but I didn't think I would react so badly.

I also checked some of the new meds that my dr put me on and sure enough they have lactose in them....hmmmmmmm. I've been checking to make sure they are gluten free and didn't think the little bit of lactose in the pills would make me sick. I guess between the 2 it was too mcuh for my body to handle.

Does anyone else have multiple food intolerances and get these debilitating reactions? Also, what do you do about the meds? they have to be made of something. Maybe I should so what i did a few years ago.....THROW ALL THE MEDS AWAY!!! The thing is my bladder had been getting bac and I've needed to take meds............boy oh boy....talk aobut going aorund in a cricle. :blink:

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

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted

About the meds - I would see if you can find a compouding pharmacy anywhere nearby (or close enough to ship medications) to have them make a compound that you can take. It may cost a bit more, but it might solve the ingredient problem.

mela14 Enthusiast
mela14
Posted
  • Author

Thanks,

I will have to do that. All of these fillers are killing me!

do you know of a headache pill that would be safe? I have been taking tylenol because it is gluten-free. I checked the Products and Medication Listing Manual and it wasn't lactose free, casein free, alcohol free or caffeine free. but then I checked the ingredient list online an it didn't show that it had any of those ingredients. Maybe the Medication listing is not up to date. I've been taking tylenol but's not breaking the headache. maybe time will.

thanks for your response.

watkinson Apprentice
watkinson
Posted

Hi mela 14,

I contacted the drug manufacturers directly about being gluten-free. They were very helpfull and I have had no problems. I am so sorry that you have been so sick.

I am also intollerant of corn, and I have had wierd reations to pecans. Almost immediate despair. No stomach upset but I feel like I can't move, like every muscle has turned to stone and I feel very depressed. Weird. <_<

Has anyone suggested to you to try taking acidophillous? It is a digestive enzyme and an immune system booster. I get mine from Trader Joes. It's gluten-free. It may help you to not have such sever reactions when you get glutened. I don't know, maybe it's worth the try.

Hope your better soon,

Wendy

LUAP Newbie
LUAP
Posted

Hey mela14

I got 2 things to say to you. One about antibiotics, one about your headaches

Watkinson is right about the probiotics. For Interstitial Cystitis, doctors probably prescribe you antibiotics. And your stories about the 7 surgeries just shows it’s not the first time you are taking antibiotics. Right now, your GI tract is probably a mess if you didn’t took probiotics each time you were having antibiotics. Its really important to take probiotics while taking antibiotics, because you never know when a bad bacteria will resist to the antibiotic, and take all the place in your GI tract. Take the C difficile story for example.

You are following the diet for interstitial cystitis : a low carb diet. You complain about headaches. Well your problem may be the diet. Headaches, when following a low carb diet is a sign of a hypoglycemia. Here is a quote from infectious diabetes from Doug Kaufmann and David Holland p.79

“With all the discussion going on about the evils of overeating sugar, you might think that dropping the concentration of sugar in your blood as much as possible would be the thing to do. In fact, a drop in blood sugar to less than 50 mg/dl would literally knock you out. And while a count of about 100mg/ dl is normal, anything below 80 mg/dl can cause the classicc symptoms of low blood sugar. These include light-headeness or diziness, anxiety, irritability tending toward hostility, paranoia, headaches, abnominal pain, nausea, heart palpitations, blurred vision, confusion, loss of muscle control and seizure”.

2 questions now;

1) what is exactly the diet you are following,?

2) have you ever did the metabolic typing test? If not, I strongly recommend you to do so. It’s free for a limited time at mercola.com.

. the test will give you an idea of the percentage of protein/fat/carb you should eat at every meal to stay healthy. If you do the test, please answer me back with the results. I can help you, I got the metabolic typing book with me, as well as others usefull ones.

mela14 Enthusiast
mela14
Posted
  • Author

LUUAP...........thanks for the advise. I will check out mercola.com.

i had another reaction yesterday and actually was up all night again with the same reaction.....flu like symptoms, muscle pain, headache, sick feeling, bloating, etc. so.....I checked everything I put in muy mouth yesterday! I really didn't eat much so it wasn't hard. I started to feel better during the day but the after dinner got so sick again. I found the culprit to be "BEANO"! My nutritionist had me taking it with my dinner to help me digest. I was up to 2 tablets and boy was I getting sick. After researching I found that I must be sensitive to the mold that it is fermented on. I am so allergic to molds! anyway, I did not have it with dinner and am not having a reaction tonight!

I guess I am very sensitive and highly allergic to many things. It is finally STARTING to make sense to me.

thank god for this board. I remember reading somewhere on this board about Apergillus Niger...which coincidentally is listed on the back of Beano as possibly causing and allergic reaction. I researched it and think that was what was making me sick. It's also in a lot of the other things that have been making me ill.

I am going to try to avoid it in other foods by checking for other names that it may be hidden under and hopefully avoid some of these unecessary incident.

thanks again for all your help guys,

ms-sillyak-screwed Enthusiast
ms-sillyak-screwed
Posted

Wendy you said, "I am also intollerant of corn, and I have had wierd reations to pecans." WHAT IS YOUR REACTION TO PECANS? They say to stay way from Walnuts.

Wendy I'm new on thryroid med with compounding doc (3 months.) Not sure what thyroid drug company to choose from for those of us that are also corn and dairy intolerent.

I just read in the book "LIVING WELL WITH HYPOTHYROIDISM What your doctor doesn't tell you...that you need to know" by Mary J. Shomon. GREAT BOOK!

She said dont take generic, the batches are NOT stable.

The natural thyroid were:

ARMOUR THYROID

NATURETHROID - hypo allerginic - no corn

BIOTECH - non corn binders

CORNSTARCH BOUND > WESTHROID this one has corn in it beware!

Now, to confuse the issue the natural thyroid medication is from GRAIN-FED PIGS. So I wonder if we would have a reaction to it?

Anyone out there in cyberspace care to share with us the right combination for you?

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

Celiac.com Sponsor (A8-M):


watkinson Apprentice
watkinson
Posted

Hi ms_sillyak_screwed,

The reaction I get from pecans is weird. Almost immediatly I feel very sad, like I want to cry. My muscles will feel heavy, and I feel like I can't move. Or at least don't want to. The reaction comes on fast but only stays around a few hours. :)

Interestingly enough walnuts are fine. Weird!

I was also hypothyroid before I found out I was a celiac. But my levels were only slightly below normal. I found out I was a celiac shortly after the thyroid levels were tested. When I went gluten-free the levels jumped up to right in the middle of the normal range. I never went on any meds for it, I guess I was lucky. I also suffer from fybromyalgia, chronic fatigue, sleeplessness, and peripheral neuropothy (nerve damage). My doctor put me on a medication called Maprotoline for the fibro. It's helped alot. :) I contacted the manufacturer about the drug and they said all thier meds are gluten-free. Unfortunatley I can't remember the name. But...my pharmacist is who gave me the name to begin with. So I'm sure if you ask, you can find out about yours too.

That thing you said about the med coming from grain fed pigs, very interesting, wow, something else to wonder about. :blink:

Wendy :rolleyes:

kabowman Explorer
kabowman
Posted

I react to very small amounts of most of the foods I have intolerances to - and I watch my meds & vitamins for all those ingredients. I find that I can tolerate some lactose in my meds and, I occasionally have problems that I cannot link to a contamination but I rarely think it is the meds. I did give up Benadryl products because they were bothering me, I now use tylenol PM instead (which isn't as strong). I just try to limit those meds...

  • 3 years later...
peepsmama Newbie
peepsmama
Posted

I recently read Doug Kaufmann's First book about fungi. I think those of us that are struggling after going gluten free may be dealing with a fungal problem too. I was on a lot of antibiotics over the years and after my pregnancies I seemed to hit rock bottom. When my oldest was dxd with celiac that was when the light bulb finally went on in my head. Our whole family practices a gluten free, no grain diet now.

Open Original Shared LinkOpen Original Shared Link

It explains why corn is so problematic, and unfortunately, it is still in most gluten-free foods. We do cheat with some gluten free grains from time to time and when we do we stick to ones that are corn free (like Bread from Anna).

Doug also has a television program called "Know the Cause"

glutenfreejenny Apprentice
glutenfreejenny
Posted

I am allergic to soy, corn, and tomatoes. I've pretty much started eating only basic foods--plain. And if I get sick I hope I can find meds i can take. My worst fear is i have to go to the emergency room for something serious and they can't find the medicine I need in a corn/soy/gluten free form.

Wonka Apprentice
Wonka
Posted

Besides gluten, I am intolerant to all legumes, including soy, all nightshade vegetables and carregeenan. It's a pain, but I stay away from them because I get so sick.

Archived

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

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


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.