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Third chronic diet - new is Celiacs

Monette Bebow-Reinhard
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Go to solution Solved by Scott Adams,

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Monette Bebow-Reinhard Apprentice
Monette Bebow-Reinhard
Posted

Anyone here juggling more than one chronic condition? I've recently added Celiacs disease to my diets for gall bladder disease and GERD. How does one live like this? I don't see the need to toss pans - I'm just going to clean them with vinegar and baking soda. It's not like I don't wash them. I am sooooo struggling with this.

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trents Grand Master
trents
Posted

Most of us are struggling with more than one chronic disorder. I have GERD and celiac. After taking a PPI for many years I was finally able to wean myself off of them with some diet and lifestyle changes. I still get heartburn occasionally but I take a TUM when I do and it seems to take care of it. Struggling with migraines right now, however.

Monette Bebow-Reinhard Apprentice
Monette Bebow-Reinhard
Posted
  • Author

Really? So I guess maybe undiagnosed celiacs could cause other issues? I stopped the PPI when I heard it could cause malabsorption of nutrients. Then he put me on Sulfracate which is horrible to take. So then you have two diets? For GERD I can't have sparkling water, which I love, spicy foods, beans, broccoli (that's killing me), and even apples at the wrong time of day. For my gall bladder it's no fried foods, no eggs, low fat dairy only, and of course, all three demand smaller meals more often. But how to find gluten free bread without egg? Right now I'm eating gluten free bagels for breakfast but the egg in them bothers me.

trents Grand Master
trents
Posted

Undiagnosed celiac disease typically causes many problems. It has long fingers. And when you have one autoimmune disease you can expect to develop other autoimmune conditions. They tend to cluster, to bring their cousins along. Some things are often corrected when we go on a gluten free diet (e.g., intolerance to dairy) but other things we live on with.

Monette Bebow-Reinhard Apprentice
Monette Bebow-Reinhard
Posted
  • Author

I was diagnosed with a low functioning gall bladder long before this, first having symptoms with pain in that area over a decade ago. I suppose it's possible I was already being affected by celiacs, but doubtful. I'm told Celiacs is genetic, and likely my mother had it and died from malnutrition. I'll never know. But I know my grandmother had GERD, which I now also have, and an aunt had gall bladder problems but never had it removed.

Suicide by gluten sounds pretty good sometimes, except I hate being nauseous and don't want to go like my mother did.

Then there's the problem of being diagnosed first as anemic. My mother-in-law died of pancreatic cancer that they didn't catch in time because they just treated the anemia without finding out why she had it. I'm not genetically related to her but my husband does the cooking and that's why my gall bladder went in the first place.

It's hard to believe this is my body anymore.

The doctor says once my small intestine heals, I should be able to eat gluten again.

trents Grand Master
trents
Posted
(edited)

Your doctor told you that once your small intestine heals you should be able to eat gluten again? That is absolutely wrong! The intestines should heal but the autoimmune condition known as celiac disease will be with you for life! It too has a genetic base and the genes won't change. You should never go back to eating gluten.

Edited by trents
Monette Bebow-Reinhard Apprentice
Monette Bebow-Reinhard
Posted
  • Author

Yeah, I thought that sounded wrong too. And I had the endoscopy last Friday, but I had to ask what he saw in my haital hernia that a different doctor diagnosed me having back in 2001 and he says I don't have that. Ah ... what? No GERD? No acid reflux?  Well, okay, I'll go off that diet then.

I know, sometimes nothing they say feels right. But what else can we do? I just want to get over feeling tired. I have to much to do and just feel like saying "I don't care anymore."

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trents Grand Master
trents
Posted
(edited)

We know something about the genetic basis of celiac disease and are discovering more as time goes on. But the genes lie dormant until there is some kind of triggering stress event that turns them on, for example a viral infection. Once they are turned on they stay on. Once this has happened the immune system mistakes gluten as an invader and attacks it as it comes in contact with the villous lining of the small bowel. This causes inflammation and, over time, damages the villi that line the small bowel such that they can no longer absorb nutrients efficiently. Many of the health problems that spin off from celiac disease are therefore related to nutritional deficiencies, even though we may be eating well.

It can take two years or more for an adult to experience thorough healing of the villous lining of the small bowel once he/she begins the gluten free lifestyle. In the meantime it is wise to go heavy on vitamin and mineral supplements in order to counteract the nutritional absorption problem. Are you on any vitamin and mineral supplements?

I am also including a link for a primer on achieving a gluten free life. Studies show that most people who believe they are eating gluten free are actually only achieving a lower gluten intake. This is especially true of those who still eat out. And it is not enough just to discontinue major sources of wheat, barley and rye such as bread and pasta. One must become aware of how gluten is hidden in the food supply and become a habitual ingredient label reader.

 

Edited by trents
Monette Bebow-Reinhard Apprentice
Monette Bebow-Reinhard
Posted
  • Author

Thank, Trents. I agree, it's so very difficult. I am taking a one-a-day but it seems to wear off by mid-morning next day. Should I up that to two a day? I wasn't sure that would be recommended. I know Doc didn't say anything. I've had two iron infusions. Getting blood tested again on Friday. But I'm not going truly gluten free until I eat the crap I've already bought. Breakfast and lunch are, but dinner is not, yet. Let's say I'm still adjusting, that's how new this is to me, like two days old.

Monette Bebow-Reinhard Apprentice
Monette Bebow-Reinhard
Posted
  • Author

Has anyone tried using GliadinX when dining out? Just in case? I headed out of state for work next week and I worry about this. I have a very active lifestyle and can't be pinned to my own kitchen counter.

  • Solution
Scott Adams Grand Master
Scott Adams
Posted
  • Solution

I use GliadinX whenever I dine out, and others on this forum do as well (disclosure--they are a sponsor here). 

Many studies have shown that the enzymes in GliadinX which are AN-PEP can break down small amounts of gluten in the stomach, before it reaches your intestines:

https://www.gliadinx.com/publications

trents Grand Master
trents
Posted

The concentrations of vitamins in a multivitamin product are too low to have much impact, especially in the short run. And it sounds like you need a jump start on nutrition.

On this forum we commonly recommend, in addition to a multivitamin:

  • a high potency B-complex
  • 5000-1000IU of D3 daily
  • 200-400mg of Magnesium glycinate or Magnesium citrate daily (these two forms of magnesium are better assimilated than more common forms)
  • 50 mg gaily of zinc

Any supplements you take should be checked for being gluten free as wheat starch can be used as a filler in pills. Costco's Nature Made, Nature's Bounty and Kirkland Signature brands are excellent choices. They will label them gluten free if they are.

I realize you don't want to waste already purchased food but I can't emphasize enough how important it is to eliminate all gluten sources from you diet immediately. Any delay in going gluten free will postpone healing of the small bowel villi and increase the risk of permanent damage to various body systems.

Monette Bebow-Reinhard Apprentice
Monette Bebow-Reinhard
Posted
  • Author

Thanks I'll print those recommendations for my next visit to the drug store. And since I don't know how long I've been gluten intolerant, as the doc says, another day can't hurt. I'll take my chances. Not made of money, and honestly, since I was hoping to be diagnosed with anything BUT this, I'll take my chances on small amounts for another day or two.

Scott Adams Grand Master
Scott Adams
Posted

You may be able to get by with One A Day brand supplements, which include nearly all you might need. They are also gluten-free.

Monette Bebow-Reinhard Apprentice
Monette Bebow-Reinhard
Posted
  • Author

Oh, that's good to hear, Scott, as that's what I'm taking and I wasn't about to toss them! (grin) But the original comment was that even when I take one, and feel less tired for a while, it doesn't seem to last the full 24 hours.

trents Grand Master
trents
Posted

You might also need an iron supplement for a time. Your fatigue is probably related to your anemia.

Monette Bebow-Reinhard Apprentice
Monette Bebow-Reinhard
Posted
  • Author

Additional? As the One a Day supposedly has 100%. Wait, let me check. Yup. Plus I'm eating more beef now, I was pretty much avoiding it. Can't eat pork - won't eat pork. I'll see what Doc says after my blood test on Friday.

Thanks, you've been so helpful!

trents Grand Master
trents
Posted
(edited)

100% RMDA is peanuts when it comes to correcting vitamin and mineral deficiencies. 100% is maintenance dosage.

Edited by trents
Monette Bebow-Reinhard Apprentice
Monette Bebow-Reinhard
Posted
  • Author

I'd like to avoid constipation, though. I'll see what the blood test shows on Friday. I do agree these other suggestions I just printed make sense.

Raquel2021 Collaborator
Raquel2021
Posted
3 hours ago, Monette Bebow-Reinhard said:

I was diagnosed with a low functioning gall bladder long before this, first having symptoms with pain in that area over a decade ago. I suppose it's possible I was already being affected by celiacs, but doubtful. I'm told Celiacs is genetic, and likely my mother had it and died from malnutrition. I'll never know. But I know my grandmother had GERD, which I now also have, and an aunt had gall bladder problems but never had it removed.

Suicide by gluten sounds pretty good sometimes, except I hate being nauseous and don't want to go like my mother did.

Then there's the problem of being diagnosed first as anemic. My mother-in-law died of pancreatic cancer that they didn't catch in time because they just treated the anemia without finding out why she had it. I'm not genetically related to her but my husband does the cooking and that's why my gall bladder went in the first place.

It's hard to believe this is my body anymore.

The doctor says once my small intestine heals, I should be able to eat gluten again.

If you have celiac disease please do not eat gluten again.  This is gluten free for life

Monette Bebow-Reinhard Apprentice
Monette Bebow-Reinhard
Posted
  • Author

I appreciate your concern, Raquel - everyone here has been great, and just what I need!

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    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease.  I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have done a lot of research on gluten-free diet and am prepared to begin a new lifestyle journey - with a lot of questions along the way.  I appreciate your information and advice! 
    • trents
      Waiting on biopsy results but wanted opinion on bloodwork

      By trents · Posted

      Let's talk about terminology for the sake eliminating (as much as possible) confusion. Unfortunately, the terms "gluten sensitive" and "gluten intolerant" have, historically, been used indiscriminately. There are two primary categories of gluten disorders whose "official" terms are 1. celiac disease and 2. Non Celiac Gluten Sensitivity or NCGS for short.  I believe there is an evolution toward using the term "gluten intolerance" to refer to celiac disease and "gluten sensitive" to refer to NCGS. I say that because the words "gluten sensitivity" are actually found in the official medical term for the non celiac medical disorder involving gluten. Does that make sense? The difference between celiac disease and NCGS is that celiac disease causes inflammation in the small bowel lining and (over time) does damage to it so that it becomes inefficient in absorbing nutrients from what we eat. This is the area of the intestinal track where all of our nutrients are absorbed. Of course, this can lead to any number of other medical problems. NCGS, on the other hand, does not cause inflammation or damage to the lining of the small bowel and therefore does not produce the antibodies that celiac disease antibody tests look for. Neither will NCGS, therefore, produce a positive biopsy result. NCGS and celiac disease, however share many of the same symptoms in the area of GI distress and NCGS is 10x more common than celiac disease. There is, at the present time, no defining test for NCGS so an NCGS diagnosis is arrived at by first eliminating celiac disease for which we do have tests for. Having said that, some experts believe that NCGS can be a precursor to celiac disease.  Yes, you are correct in stating that both conditions require a gluten free diet.  So, in the absence of official testing for celiac disease (and official testing done under the proper conditions) a person who is experiencing distress when consuming gluten cannot be certain whether they are dealing with celiac disease or NCGS. Not to have an official diagnosis of celiac disease while actually having the condition makes it difficult for some folks to stay on the gluten free bandwagon. It's just the psychology of the situation and wanting to rationalize away a very inconvenient and socially isolating medical condition.
    • Lynnard
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      By Lynnard · Posted

      Thank you!  This is super helpful and confirms everything I have read. I was definitely eating lots of gluten before both testing and endoscopy. If the biopsies do come back negative, I'm wondering how conclusion/distinction is made between celiac and gluten intolerance is made.  Or does it matter because presumably recommendation of gluten-free diet will be the protocol??  
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      You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but typically fail to be helpful when it comes to things like assisting their patients in grasping how to get started on gluten free eating. The other thing that, to me at least, seems to be coming to the forefront are the "tweener" cases where someone seems to be on the cusp of developing celiac disease but kind of crossing back and forth over that line. Their testing is inconsistent and inconclusive and their symptoms may come and go. We like to think in definite categorical terms but real life isn't always that way.
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      By Rogol72 · Posted

      Hey @Morgan Tiernan, Sounds just like my experience. I was diagnosed with dermatitis herpetiformis over 10 years ago. It appeared suddenly as a very itchy rash which looked like Eczema. When a steroid cream didn't clear it up, my Dermatologist (who had come across it before) suspected dermatitis herpetiformis and performed a skin biopsy which came back positive for dermatitis herpetiformis. The important thing is to get a definitive diagnosis of dermatitis herpetiformis. What you've described sounds like classic dermatitis herpetiformis though. Hopefully, your Dermatologist has come across dermatitis herpetiformis before and performs the skin biopsy correctly as trents mentioned. I've had the blisters on the knees, hips, forearms/elbows or anywhere that pressure is applied to the skin ... from clothing or otherwise. They itch like nothing on earth, and yes salt from sweat or soaps/shower gels will irritate a lot. I've been on Dapsone and it is very very effective at eliminating the dermatitis herpetiformis itch, and improved my quality of life in the early stages of getting on top of dermatitis herpetiformis while I adjusted to the gluten-free diet. But it does have various side effects as trents said. It can effect the red blood cells, lowering hemoglobin and can cause anemia, and requires regular blood monitoring whilst on it. You would need to consider it carefully with your Dermatologist if you do have dermatitis herpetiformis. Here's a very informative webinar from Coeliac Canada discussing everything dermatitis herpetiformis related.  https://www.youtube.com/watch?v=PAdmsNiyfOw I've also found this recent interview with a Dermatologist about dermatitis herpetiformis to be educational.  https://www.youtube.com/watch?v=rZnLeKutgUY Keep the chin up and keep advocating for yourself for a proper diagnosis. Though it sounds like you're on top of that already. Are you in the UK or Ireland? I'm curious because your surname is Irish. 
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