No diagnosis, lots of problems, celiac disease?

[someone0]

Hello,

When I was 18 I stopped eating gluten because my dad had done it and he said it helped him feeling a lot less tired. I also felt less tired when I stopped. Many years have passed since and I've been eating a mostly gluten free diet. I have had accidents since, where I have eaten gluten. For a while a couple of years ago I ate non-gluten-free oats for breakfast and I had a bad stomach every morning. Nowadays if I eat just a tiny amount of gluten I'll fall asleep within an hour and I'll drool a lot (not normal sleeping for me). I also get stomach pains and diarrheas, and my mind gets foggy for at least a week. Since a couple of years ago I've tried to completely avoid gluten, however a year ago I developed lactose intolerance. I believe it was a consequence of accidentally eating gluten once. A couple of months ago I could no longer drink even lactose free milk and substituted it for soy milk. Now I'm noticing issues with both soy and egg products. My stomach is consistently f$#%ed up. I've had black stools on a couple of occasions along with severe abdominal pain. I also got sensory loss in the back of my head a year ago which has now gotten better since it has developed into paresthesia. I think it is caused by vitamin deficiencies, magnesium and vitamin D, since after I've taken it the paresthesia replaced the sensory loss. I might also mention that I've had difficulty swallowing since I was 16. My bones feel weak, my teeth ache often and I have no appetite. I've been to multiple doctors multiple times and they have no clue what's wrong with me about anything. I don't live in the US. I have never been diagnosed with anything. 

I wonder, do you think I have celiac disease and if so can my issues with eggs, soy, milk protein and lactose be caused by it? How about the other symptoms, could they be related? Lastly, what sort of tests should I ask the doctors to perform on me? If someone could offer any advice on this I would be very grateful. 

[KathleenH]

Hey!! Sorry you arent feeling well  . One thing I have noticed and read about is that people that go on gluten-free diets when they arent advised they often experience complications like you have. I think this happens because of things like vitamin deficiency and loss of nutrients from not eating the grains like wheat, barley, etc. Now on the other hand Ive also read a lot about how stuff with gluten in it is inherently bad for you so maybe if you stopped eating it your body enjoyed it and when you had it again your body was like "wth I dont want this stuff again?!" Making you feel sick. I guess the only way to really know it to go visit a doctor. Probably a gastroenterologist is your best bet unless you go see your general practitioner first and have him refer you to a good docotor. I am definitely not a doctor so I could be totally wrong but thats all the information Ive been finding lately and it seems reputable. 

[someone0]

Thank you for your answer Kathleen. You may be right about the gluten thing. Had I known then what it ment I would have never quit gluten just like that. Obviously I can't eat any gluten whatsoever at this point so I can't do a celiac disease test either. Unfortunately, I live in a country with bad doctors (Sweden). I've been trying to get help for almost ten years. In fact, I once had iron deficiency, really severe. For two years I had a resting heart rate of 100+bpm and passed out on a weekly basis, worst part is that my memory got so bad, that I couldn't understand what people were saying to me because once they reached the end of the sentence I had forgotten the first part. I went to 5-10 different doctors and neither could tell that it was iron deficiency. My psychiatrist prescribed heart medication to lower my heart rate and ADHD treatment drugs to help me focus (I don't have ADHD). It wasn't until I specifically asked for a ferritin test that it turned out that I had iron deficiency. My brain is still struggling with the aftermath from it. Now I have absolutely zero confidence in the health care system here. The doctors here are really lacking when it comes to knowledge about nutrition so maybe my best shot is to see a dietitian. The sad part is that you can't even really test most nutritional deficiencies (at least not in this country) and so you're left with the trial and error method, which is where I've been at for the last couple of years. 

[cyclinglady]

Unfortunately, all celiac testing requires you to be on a gluten diet.  The blood tests require 8 to 12 weeks.  The endoscopy to obtain biopsies require 2 to 4 weeks.  

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Here is more about a gluten challenge (eating gluten after being gluten free for a while) in order to get tested:

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Sweden has some of the highest celiac rates in the world.

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 I am sorry that you have not been able to get a diagnosis that could resolve  your symptoms.  There are over 300 symptoms known for celiac disease.  They vary so much.  That is why the blood tests are an important part of the celiac disease diagnosis process.   

Since you are against a challenge, look to your diet to make sure you are gluten free.  Keep a food journal to help you pinpoint your intolerances.  Consider asking for the blood test anyway.  You might have been exposured to gluten that could show up.  

I hope this helps you!  

 

[KathleenH]

I would maybe just try eating gluten free now if you cant get an official diagnosis. I mean as long as you are getting your daily nutrional requirments theres no harm done I wouldnt think. I do keep a food journal as the cyclinglady suggested and it really does help! I also write down how im feeling that day. 

[Michelle1234]

This is from a post back in 2013. The only think I do now is Enzymedica Digest Spectrum and Acid Soothe after dinner so as not to get GERD problems at night. But here are the supplements that fixed it all.

Here is a link to the the original thread:

After about 5 yrs eating gluten free I developed massive food allergies to everything I ate. I had been following this forum for pretty much the entire time and noticed that alot of other people developed them also. Fortunately I have a great Dr. who did some tests and put me on some suppliments (over the counter) that solved it all. For any one who is interested but perhaps doesn't have access to good Drs. or can't afford the $1000 test here is what I started taking:

 

Allimax - contains Allicin is an organosulfur compound obtained from garlic 2x per day for 8 weeks.

 

Candibactin-BR - From (Company Name Removed - They Spammed This Forum and are Banned) 'CandiBactin-BR provides extracts of herbs including berberine-containing plants to support healthy immune, detoxification, and elimination functions. Featuring berberine hydrochloride and extracts of Oregon grape and coptis roots, the formula encourages a healthy intestinal environment and supports detoxification function of the liver and gallbladder. A proprietary extract of Chinese herbs-including ginger, licorice, and skullcap-harmonize the action of the other herbs within the formula. Product Review as Follows: "I am using this in conjunction with other supplements to clear up a candida problem. Working well. I will keep this handy for maintenance once things are cleared up."' 2x per day for 8 weeks.

 

Both of the above with food and Ok at the same time.

 

These were to wipe out bad yeast in my gut.

 

To be taken NOT with the above:

 

Ultra Bifidus DF - A probiotic supplement featuring a specially cultured, highly viable, pure strain of the beneficial bacteria, Bifidobacterium lactis. 1/2 tsp per day

 

Saccharomyces boulardii - From webMD "Saccharomyces boulardii is called a "probiotic," a friendly organism that helps to fight off disease-causing organisms in the gut such as bacteria and yeast." My dr. explained that it was a replacement for the bad yeast that the above were killing. From the NOW vitamin description. "

Saccharomyces boulardii is a probiotic yeast that survives stomach acid and colonizes the intestinal tract. It promotes the health of the intestinal tract, helps to encourage a healthy gut flora balance.** Saccharomyces boulardii has also been shown to support proper gastrointestinal function during a disruption to the normal balance of gut flora.**

Manufactured by Now Foods." 3x/day

 

I now just take a maintenance dose of Allimax and Candibactin BR. But I haven't consulted with the Dr on this. It just seemed to me that when I dropped these completely I eventually started getting stomach aches again after eating. When I take them I'm fine will all foods except of course gluten. I ended up not continuing with the UltraBifidus DF or Saccharomyces Boulardii beyond the intial doses largely because I'm lazy and I like the Pearls probiotics and the Enzymedica Digest Spectrum because they are an easier form for me to take. I hope you get your problem cleared up. I wasn't going to accept not being able to eat any dairy, eggs, some meats, some vegetables, some fruits etc. It would have been a very unhealthy and restricted diet long term.