Went lactose free and feel even worse - why?

[Aaron275]

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

[cyclinglady]

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 August 28, 2020 by cyclinglady

[DJFL77I]

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]

  On 8/28/2020 at 11:08 AM, 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.

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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]

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]

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]

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.

[knitty kitty]

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]

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]

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

[knitty kitty]

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! 

 

  On 9/1/2020 at 3:47 AM, 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.

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[Aaron275]

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