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swim2hawaii

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swim2hawaii Newbie

Hi guys, I desperately need some help.

I am currently studying abroad in Chile and having major digestive issues. I went to the doctor's but unfortunately the healthcare system just does not offer the same quality of care tht it does in the US and they found nothing wrong with me after doing stool\blood samples to eliminate the question of parasites and pregnancy. I will be returning to the states in 3 weeks so I figured I would wait until I got home to go to the doctor's again. I need some help from this community though because I think I may have celiac's and everyone is treating me like I am crazy. It all started a couple of months ago after I underwent a traumatic experience of being robbed.  Here are my symptoms...

-Lactose Intolerance. I have been lactose intolerant for many years though.

-Missed menstural periods.. My period used to be extremely heavy and painful and all of a sudden about 6 months ago it just suddenly stopped. It has come back every now and again randomly. (There is a 0% chance I am pregnant)

-Vomiting. Every 2 to 3 weeks or so I wake up at about 7 AM feeling sick to my stomach. I then vomit yellow bile. It seems to be associated when I eat too much fatty food or too much food in general the day before. I always feel better afterwards.

-Diarrhea\ constipation. My body keeps on jumping back and forth between having diarrhea and constipation. It is never normal

-Fatty stools. My stool always, always floats regardless of what I eat

-General discomfort after eating. If I eat anything other than oatmeal and an occassional piece of fruit I feel uncomfortably full and bloated.

-Anxiety

-Painful lower back

-Painful joints in my hands and feet

-Fatigue

-gas after fatty foods, dairy, legumes, (not necessarily gluten)

***My body doesn't feel any worse after eating gluten products as opposed to fatty products so it makes me wonder if I just have a problem not digesting fat and not gluten??

 

As you can see these symptoms are random and do not seem to be connected. I feel so hopeless because I feel like I will never get better and people usually kind of imply that I am whining or paranoid when I tell them I feel sick. But my body feels terrible almost all of the time.

I would love your suggestions on what I should do. I don´t have a doctor´s appointment for another month and I have a feeling they won't believe me if I say I may have gluten intolerance.

 


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GFinDC Veteran

Hi swimtohawaii,

Your symptoms do sound like they could be caused by celiac disease.  And you may have had it a long time.  Symptoms can suddenly get worse even after a long period of not being noticeable or very bad.   Lactose intolerance is associated with celiac disease because the damage to the intestinal villi affects the ability to digest lactose.  Sometimes lactose intolerance reverses after healing the gut, but not always.

Now for suggestions.

1, Don't go top just any doctor for testing.  Take the time to research celiac disease support groups in your new area and see if they can recommend a knowledgeable doctor.  If you can't find a celiac support group for the area, search for a celiac center in the area.  Some hospitals have dedicated celiac centers.  Usually the celiac testing will involve a trip to a gastronenterologist.  The testing process is usually a blood antibody test panel for celiac disease, followed by an endoscopy later.  The endoscopy should include 4 to 6 biopsy samples for microscopic examination.

You should not stop eating gluten until all testing is completed.  Stopping gluten ahead of testing can ruin the test results.  The tests are looking for antibodies in the blood and damage to the intestinal villi.  When you stop eating gluten the antibodies may start to decline limiting the ability of the tests to detect them.

There are a few things you can do to help in  the meantime though.

You on;y need to eat a small amount of gluten to keep the antibodies going.  A slice of bread is enough.  You can also stop all dairy now, if you haven't already.  You can try some Pepto Bismol and Milk of Magnesia for gut symptoms.  Peppermint Tea or peppermint Altoids can help to get gas out of the stomach.

I hope that helps some, and welcome to the forum! :)

BlueTree Newbie

As above keep eating gluten. These symptoms could be for a variety of reasons. Not only celiac & gluten sensitivity, but also IBS or SIBO. If you do not get clear answers, find a good GI doctor. I know that can be hard to do, but reach out to these types of groups or local support groups. 

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    • knitty kitty
      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    • trents
      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
    • trents
      Another great fiber option is dried apricots. Four of them give you 3g of fiber and I find they don't produce all the gas that some other high fiber options do. They taste good too. Costco sells a large bag of them that are labeled gluten-free so you don't have to worry about cross contamination issues like you might in bulk grocery settings.
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