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New To The Gluten Free World

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Hi everyone.  This is my first time posting although I've been reading some of your posts for a week or so now.  I have a few questions that I hope you can all help me with. 


A little catch up on where I've been and where I am currently.  I was diagnosed with hypo thyroid 10 years ago and have been on Synthroid since then. At that point I was getting horrible back pain, tired all the time, and just plain didn't feel well.  Since then some symptoms have stabilized and some have just gotten worse.  For the last 10 years and probably well before then, new issues just keep popping up.  Just a list of symptoms I have had on going and unexplained are chronic diarrhea, stomach pain, constipation, bloating, gas that just seems to not go away, pain in my lower back, random hot flashes, anxiety, dizziness, fatigue, crying for no reason, and other minor symptoms.  I have had days where I would have to run to the bathroom 5 or 6 times a day.  After I would feel so exhausted and hungry to the point that I just can't seem to get full.  This would be followed by about a week of constipation, bloating, gas etc.  I have had stomach, liver and gallbladder ultra sounds come back normal. I have taken multiple thyroid tests that came back normal.  About 2 years ago I started having short periods that would last about 2 days and then I would get multiple in a month.  Usually about every 2 weeks.  I've had ultrasounds for that come back normal.  I've been told its hormones, depression, all in my head.  At one point I was in my Drs office in tears because nothing was making sense.  I've also been diagnosed with high levels of fatty enzymes in my liver.  I am only 30 years old, I exercise, eat very healthy.  I rarely have sugars and eat mostly whole foods.  So you can see where all my frustration is.  Recently my sister suggested something called the FODS food list for IBS, I did that for about a week and noticed that my symptoms flared up when I ate bread.  So I cut it out for about a week and I started feeling better. 


Anyway, I had my blood tests for celiac this morning and have an appointment with the GI next week.  I know I am supposed to continue eating gluten until testing is completed.  I was only off for about 5 days and since then have been eating it just not every day.  I noticed when I do eat it I have horrible stomach pains, I bloat up with in 30 minutes, I get really tired and heavy and this lasts about 3 or 4 days.  My question is do you think being off of the gluten off and on a couple days here and there would make much of a difference?  And is it normal to get such a horrible reaction to it only a few days being off?  My doctor had said I didn't have to be on it for the blood tests but everything I read says the exact opposite. 


I'm really hoping that this could be the answer. I'm at my wits end and at this point just don't want to eat for the fear of getting sick.  Have any of you had similar experiences or have any advise on how to get through all this?  Thanks all!



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I am sorry that you are feeling unwell!

Here is a link to the University of Chicago's celiac website. Share the test requirements with your doctor:

Keep eating gluten until all testing is complete! It is hard, but it can be done! You can do it! just take one day at a time.


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    • Hi Sunshine, There is a program called a 504 plan that some schools will follow if you get one approved.  It helps the school identify proper ways to deal with a child's particular needs.  Probably it is helpful to have a 504 plan, but they may require a formal diagnosis for it.  I suggest you talk to the school and ask them about it.  Tell them the situation with the kid and about the stress he would need to go through to get diagnosed.  They may be willing to work with you without a formal diagnosis.   I am not saying you absolutely have to have a 504 plan for him.  School districts vary and some may be more accommodating than others.  A 504 plan may give you certain rights, but I  am no expert on them. The gluten challenge is 12 weeks of eating gluten for blood tests.  The payback for being formally diagnosed is questionable IMHO.  Treatment is the same regardless, eating gluten-free for life.  One thing to be aware of is that celiac disease has a genetic factor.  So he got the gene from one of the parents.  Anyone else in the family could have celiac develop at some point.  So testing every couple years for all family members is a good idea. Welcome to the forum!
    • Thank you everyone. I appreciate all of the information and support.  I am feeling overwhelmed right now and it was really getting me down yesterday. I don't feel so hopeless now. 
    • Okay. I think I will start with an allergist and a dietitian. 
    • Yes, that list I posted includes stuff to look out for in your cosmetics as well, I think. Spices get contaminated often depending on brands, sources, and packaging plants, you have to find brands that are certified, I find Spicely Orangics works here. Supplement wise I am on a ton. I take combinations of Liquid Health Brand, Stress & Energy and Neurologic Support for B-Vitamins, I take Doctors Best Chelated Powdered Magnesium. I drink a bunch of almond milk and eat a lot of nuts, seeds, green leafy veggies, and a huge viarity of foods always having a mix to balance out my needs in vitamins (I studied alot an worked with a dietician to learn what contains what and find my balance). I found a IBS targeted probitotic from jarrow seems to work best with me and no bloat. List of other supplements if you want but with celiacs different people can get different deficiencies and you should probably talk to a dietician and see about having your own regiment built up. I just listed the common ones. I was thinking about this later on and after I got off the stuff for awhile I found myself randomly vomiting from some foods, none of the brain fog, numbness, Just throwing up. Ended up I developed intolerance to certain foods like egg yolks, soy, and a few others things. I also developed allergies to corn where I would just get sores in my mouth and digestive tact and run 99-102F Fevers when I ate anything contaminated with it. And a peanut allergy that caused me to distend and swell throwing up for hours and getting a rash later on. My different reactions to different foods made my dietician laugh at how odd my body is (we both did after talking for awhile) and my doctors found it interesting and kept on wanting to run more test.
    • I will cut dairy out immediately. I have eliminated most processed foods already. I do use a lot of spices. I read labels on everything. It is so overwhelming. Is there a good list of ingredients to look for in cosmetics, soaps, supplements... ? It has been recommended that I take a probiotic, calcium and vitamin D. Do you take supplements?
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