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

Went lactose free and feel even worse - why?


Aaron275

Recommended Posts

Aaron275 Enthusiast

Hi,

I accidentally ate gluten a few weeks ago and am still having issues. I recently tried going lactose-free because I know that lactose is one of the main intolerances that appears when we eat gluten.

However, the lactose-free products that I tried made me feel even worse. I tried replacing my usual dairy products with lactose-free and dairy-free products and most of the products that I tried made me feel horrible.

Is the most likely explanation that these products had more ingredients in them that I can't tolerate than the lactose-containing products did? Or could it be something else?

Thanks


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master
(edited)

Have you had follow-up testing for celiac disease?  Maybe your celiac disease is still active.  I think you need to find out.   What if you have developed something like Crohn’s?  The last time I had a gluten exposure, I ended up with autoimmune gastritis diagnosis.   No food intolerances, no celiac disease (biopsies showed all healed), no “all in my head” — just another illness.  

Lactose?  What if you are allergic or have an intolerance to milk proteins too (casein, whey)?  Those can be found in lactose free foods.  You might trying dropping anything that comes from a cow for a few weeks.  
 

You started feeling bad after a long term peanut exposure, right?  Maybe time for another visit to an allergist/PCP.    Maybe you have developed more allergies (e.g. milk proteins).  I think you should be healing or feeling better by now.  It has been since November, right?  Something is wrong.  Either you are still getting gluten into your diet, have new allergies or intolerances, or a new illness.  See your doctor.  If that is not possible, trial the Fasano gluten-free diet for three months.    If it does not work, then gluten exposures are probably not the problem.  If you feel good, then you know gluten was getting into your diet.  

Edited by cyclinglady
DJFL77I Experienced

did a biopsy show you had autoimmune gastritis ?

Diagnosis of autoimmune metaplastic atrophic gastritis is made by endoscopic biopsy. Serum B12 levels should be obtained.

cyclinglady Grand Master
5 hours ago, DJFL77I said:

did a biopsy show you had autoimmune gastritis ?

Diagnosis of autoimmune metaplastic atrophic gastritis is made by endoscopic biopsy. Serum B12 levels should be obtained.

I think you were directing this question to me.  Yes, gastric biopsies revealed my AIG.  Yes, B-12 levels are checked but are always above range and I do not supplement.  Iron is checked as well.  Must be all those eggs I eat!  

Aaron275 Enthusiast

Hi cyclinglady,

Yes, that was me with the peanuts. I visited an allergist back in March and was tested for a peanut allergy and the result was negative. I told the allergist that I was celiac and he said the most likely scenario is that the peanuts were contaminated with gluten (there was a warning about this on the packaging but I didn't notice it), and that's why I felt bad after eating them.

I accidentally ate gluten again about a month and a half ago and I suspect that this is what is causing my current intolerances. I felt really bad for a while, but I've been feeling a little better lately so hopefully things are improving.

I do think that I need to do an elimination diet to heal properly because I keep becoming intolerant to new things. I have been wanting to do the Paleo AIP diet. I will look at the Fasano diet as well.

My last celiac testing was done in January and the results were normal. I am seeing my doctor in a couple of weeks and I will bring this up and ask about repeating the tests and also the possibility of testing for other illnesses.

cyclinglady Grand Master

It sounds like gluten is the current  source of your problems.   What do you think is hard about the AIP diet?   What will you miss?  Maybe just modify it.  Like I did with the Fasano diet.  I never gave up coffee.   I think that simply not getting exposed to gluten is your first priority (I know you know that).  While you might have developed additional intolerances, maybe you did not.   I dread eating in the morning when my celiac disease is active.  Anything, even gluten free foods are going to hurt.  But the AIP diet will not harm you and it might help.  I know the even fasting for me (12 to 16) hours gives my GI tract a chance to rest.  

Aaron275 Enthusiast

I'm struggling with food preparation and cooking. My short term memory is bad and I already struggle with organizing and planning meals, and this is much harder on such a restrictive diet like AIP.

I just can't seem to remember all the steps that are required, like how much food I need to buy, how to prepare it, how much I need to prepare, etc.


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



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master

Aaron,

The AIP diet was very simple for me to follow.  I gave up putting together complicated recipes because I was having difficulty remembering, planning and thinking, too.  I simply ate to live. 

I bought ground meat and made a patty.  I could get four to six patties out of a pound of ground meat, depending on the size of the patty and the size of my appetite.  I used ground beef and ground lamb.  I also used boneless chicken tenders or breasts.  And I used chicken liver and calves liver.  So I would buy seven packages of ground meat for a week, plus a couple of packages of chicken breasts and tenders, and several packages of liver.  I also bought several  packages of different frozen vegetables (plain without sauces or seasoning) and easy to prepare fresh veggies, like carrots and romaine lettuce for a side salad. 

The only thing I had to remember was to take a package of meat out of the freezer for defrosting.  There were days I even forgot this.  Luckily, calves liver slices came individually wrapped and could be steamed from the frozen state.  

I put a meat patty or a chicken tender or a few chicken livers in a pan, added some water and some fresh or frozen vegetables.  I let that steam and in a few minutes I had a meal.  You could also zap these in a microwave.  Sometimes I plopped everything in a baking dish and chucked it in the oven.  

I kept my meals very simple and plain, because I had problems thinking which turned out to be due to vitamin and nutritional deficiencies.  Deficiencies in several of the B vitamins, (thiamine, niacin, B12), Omega 3 fats and Vitamin C can effect your memory and thinking processes. 

Malabsorption of nutrients is common in Celiacs.  Our damaged intestines have trouble absorbing all the nutrients we need to heal.  Getting checked for nutritional deficiencies is part of follow up care for Celiacs.  Discuss with your doctor the benefits of taking a B Complex vitamin supplement while you're healing.  

I focused on nutrient dense foods.  I did not buy gluten free processed foods like cookies or chips.  

I ate a lot of liver because it is very nutrient dense and I like it!  Liver has a lot of the vitamins and minerals in which I was deficient. 

 As you heal and see improvements in memory and thought processes, you can experiment with more complex recipes.  

Hope this helps!

Aaron275 Enthusiast

Hi knitty kitty,

Yes, that sounds like a good plan. I do have one concern though - I am worried that if I make the diet too simple I will run the risk of developing nutrient deficiencies.

Like you said, I probably already have deficiencies, so is this something to be worried about? Or will the healing offset any potential issues?

Also, I can't tolerate vitamin supplements at the moment, they make me feel worse. I'm pretty sure the tablets cause irritation.

Aaron275 Enthusiast

I meant that I might run into deficiencies because I might not be eating a wide enough variety of foods.

knitty kitty Grand Master

Aaron, 

I had nutritional deficiencies before I started the AIP diet.  My various doctors had totally missed diagnosing Celiac Disease, pellagra, anemia, and thiamine deficiency.  Eventually I did find a doctor who ordered a genetic test for Celiac Disease which showed I have two genes for Celiac Disease.   However the nutritional deficiencies aspect had been ignored.  

I was very disappointed in the lack of knowledge of the medical profession concerning Celiac Disease and nutritional deficiency diseases.  Doctors are trained to treat the symptoms of disease with pharmaceuticals, not to find the root cause of the disease.  Blessed with a university degree in microbiology, I reviewed my courses in nutrition and did further research.

I supplemented vitamins and minerals and Omega 3 fats and chose the AIP diet.  My health improved, although I still felt as if I was struggling.  

The AIP diet excludes legumes, rice, seeds and nuts, and green peas, which are all good sources of thiamine.  Although the AIP diet does allow seafood and pork, also good sources of thiamine, I'm allergic to fish and shellfish, and I do not eat pork.  So my AIP diet choices were deficient in thiamine.  

The doctor that did the genetic test for Celiac Disease said my vitamin tests were fine after months on the AIP diet and suggested I stop supplementing.  I quit taking my vitamin and mineral supplements and my health suffered severely.  Unfortunately, this doctor had only tested B12 and Vitamin D.  (With a grateful nod to Cycling Lady, always get copies of test results and medical records.)

So I did further research and found the book " Thiamine Deficiency Disease, Dysautonomia and High Calorie Malnutrition" by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Their book explains that in thiamine deficiency, the thiamine transporters that allow thiamine into the body's cells shut down, and the mitochondria that utilize thiamine-based enzymes to make energy for body functions are damaged. Without enough energy production, the body can't work as well and symptoms vary widely due to differences in genetic makeup and environmental factors.  In order to get the thiamine transporters working again, high doses of thiamine (300mg/day or more) are needed. Mitochondria take months to regenerate.  (There is no toxicity limit to thiamine, it is safe in high doses.) I resumed supplementing vitamins and minerals, and began taking the high dose thiamine.  I noticed immediate improvements.  I'm still improving several months out.  Thiamine needs magnesium, Vitamin C, niacin, B6 pyridoxine, and riboflavin to work properly.  I also supplement these.

My advice to you would be to find a doctor and nutritionist or dietitian with some experience with Celiac Disease and nutritional deficiencies.  Since this is apparently rare, at least in my corner of the world, educate yourself on nutrition.  I would suggest supplementing vitamins and minerals at least until you can expand your diet to include more thiamine foods not allowed on the AIP diet.

The complex of eight B vitamins and Vitamin C are water soluble and can't be stored long in the body.  They all work together and need to be replenished every day.  Excess water soluble vitamins are excreted in urine.  The fat soluble vitamins (A, D, E and K) are able to be stored in the body but because Celiacs have trouble absorbing fats, these may be low.  

There is a paradox when taking vitamins, especially thiamine.  You may feel worse before you feel better.  I felt this paradox with thiamine, just as Dr. Lonsdale and Dr. Marrs' book warns.  It's like starting a car engine that has been allowed to sit for a while.  You'll get a bunch of dust and gunk blown out before the engine starts running smoothly again.  

I'm not a doctor.  This is my experience with Celiac Disease, malnutrition, and thiamine deficiency.  Discuss with your doctor any dietary changes and nutritional supplementation.  

I hope this helps! 

 

13 hours ago, Aaron275 said:

Hi knitty kitty,

Yes, that sounds like a good plan. I do have one concern though - I am worried that if I make the diet too simple I will run the risk of developing nutrient deficiencies.

Like you said, I probably already have deficiencies, so is this something to be worried about? Or will the healing offset any potential issues?

Also, I can't tolerate vitamin supplements at the moment, they make me feel worse. I'm pretty sure the tablets cause irritation.

 

 

 

 

Aaron275 Enthusiast

Thanks knitty kitty and cyclinglady, I really appreciate the help.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,869
    • Most Online (within 30 mins)
      7,748

    Joyetta
    Newest Member
    Joyetta
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Shining My Light
      Thank you @trents! This is all sound advice. In 2022 I did have a biopsy done with the EGD: SPECIMEN: (A) DUODENUM, BIOPSY (B) GASTRIC BIOPSY(C) GASTRIC POLYP, BIOPSY(D) ESOPHAGUS BIOPSY (E) ESOPHAGUS BIOPSY This would have been when the candida was found.  If I understand right it’s the duodenum they take a biopsy of. Nothing was mentioned about Villous atrophy however they were not looking for that particularly.    Something that stumps me is the correlation between symptoms and damage. One seems to equal the other. I have yet to see damage with “silent celiac”. Not saying it doesn’t exist.  Also super curious on other symptoms that would improve based on a gluten free diet. Obviously silent celiac wouldn’t have an improvement in GI symptoms but that is all I have read any data for. No one saying things like my anxiety went away or my headaches and joint pain are gone.    I see why it would be a “gluten challenge” since eating 4-6 slices of bread daily is a challenge to do. 😳 I would replace that with cake 🍰😉 
    • xxnonamexx
      I know I haven't been tested for Celiac yet. But If I took a blood test would they be able to say what I am deficient in as far as vitamins and minerals so I can see what supplements to take or is it not that easy to figure out what is needed to balance out vitamins/minerals. 
    • trents
      All that is exactly why you should have an endoscopy with a biopsy of the small bowel lining done. It's a very simple procedure and in the US they put you under for it so there is no discomfort. You don't even have to do a cleanout like you do for a colonoscopy.  It might also be wise to wait a few months and get the tTG-IGA checked again if nothing else. If it elevated now due to some temporary infectious process, it should not remain elevated. But a biopsy would distinguish between IBD and celiac disease. And remember, the diagnosing of diseases is often not a black and white, cut and dry process. You often have to weigh all the evidence and just go with what is most likely the cause. When tTG-IGA is elevated, the most likely cause is celiac disease. And the gold standard test for diagnosing celiac disease is still the endoscopy with biopsy. But if you decide to go for further testing for celiac disease of any kind, you must not first embark on the gluten free diet.
    • knitty kitty
      I understand your exasperation.  My doctors were totally clueless.  Me?  I couldn't believe it was so simple.  I had studied nutrition before earning a degree in Microbiology because I was curious about what the vitamins were doing inside the body.  It's about giving the body the nutrients it needs to heal.  Read my blog for more of my journey...  Do take the time now to make some changes.  It's a matter of putting on your own oxygen mask first before you do anything else.  I regret I didn't do more to take care of myself first.  It's amazing how quickly ones life can unravel if in poor health. Simple things you can do immediately that will help are: Stop consuming oats, dairy, and corn. Keep a food-mood-poo'd journal so pinpointing problematic foods is easier. No alcohol. Avoid nightshades.  Do cut back on or eliminate processed gluten free facsimile foods.  These are not nutritious.  They are not enriched with vitamins and minerals like their gluten containing counterparts.  They contain saturated fats and excess fiber that can be irritating to the digestive tract.   They are high in simple carbohydrates that promote Small Intestinal Bacterial Overgrowth (SIBO). Do focus on meat, veggies, fruit and healthy Omega 3 fats (olive oil, avocado oil).   Do make stews and roasts overnight in a crockpot.  Make small batches.  Leftovers increase in histamine the longer they are left.   Do talk to your doctor about supplementing with a B Complex and Benfotiamine (a form of thiamine shown to promote intestinal healing).  There are eight essential B vitamins.  They work in concert together like an orchestra, so they need to be supplemented together.  Taking extra thiamine and Benfotiamine have been shown to be beneficial.  Weight loss can be a symptom of insufficient thiamine. I believe you mentioned you were low in some vitamins. Can you tell me  which ones?  
    • Shining My Light
      @trents - sorry, I know that didn’t make sense. I need to get better at rereading the things I write.    The people I know of that have a gluten sensitivity or intolerance have tested negative for celiac. They can’t have gluten of any kind without having a reaction. That to me isn’t helpful. If I reacted to gluten I wouldn’t eat it regardless of it being celiac or not. I’ve come to learn the real issue with celiac is the damage, not the intolerance.    Gliadin Deamidated is another test I’ve seen that I wanted to get done. Also, the genetic testing. HLA-DQ2 and HLA-DQ8. Although my liver levels are not elevated now, I went through a time when they were. I would say maybe 7 years ago. I also had major GI symptoms at that time. They had ordered a EGD then but I chickened out. This makes me even more confused. I would think that if celiac were the cause my liver numbers wouldn’t have improved. Which again makes me think more of IBD being the cause of my TTG levels being elevated.  One thing that would make me motivated above all else is the neurological aspect. I’m still trying to dive deeper into that which has me the most interested. I think GI issues are an obvious symptom, it’s the connection in the rest of the body, particularly brain function that is most intriguing.         
×
×
  • Create New...