Is It Just Me?

[amberlink09]

Hey guys,

I feel like I've heard SO many stories about people going gluten free and experiencing relief from all their symptoms within months, but this isn't the case for me. I have been gluten free for two years and maintained as strict a diet as possible, my blood tests show no autoimmune response since I've been gluten free. In addition I've done the SCD diet and now I've identified dairy, oats, corn, and rice as problem foods. Honestly though, lately anything will make me sick to my stomach. I feel as though I am getting worse.

I've been tested for chrons but I don't have it and I have recently found put I'm hyperthyroid. I'm also deficient in most vitamins and anemic- a sign I'm still suffering from malabsorption. Oddly enough I also have high triglycerides.

At this point I have nearly no immune system, and I have been hospitalized twice in the last year. Now the doctors say I probably don't have celiac, but IBS. This makes no sense to me.

I am 20 years old, 115 pounds, I exercise when I can and eat as healthy as possible, so I should be in the group that makes a full recovery in a few months. I am confused and tired of getting no results and no answers.

Sorry for the long post, but if you have any

Experience with this please let me know.

Thanks,

Amber

[Almendra]

I hope that they find an answer for you.

There is such a thing as unresponsive Celiac Disease - I think it's Refractory Disease (or something like that). Joe C (Kid Rock's friend) had that, I think.

There is also a DNA test to see if the gene for Celiac is even in your DNA (being a genetic disease). If it's not, then, from what I understand, then there should be no way you have Celiac - and back to the drawing board.

I don't know if either set of information could be helpful to you, but best wishes on your recovery, all the same!

[tictax707]

oh, I am so sorry... Two quick questions: when you say as strict a diet as possible, what does that mean? Can you elaborate a little bit on possible ways gluten can be getting in? (it may not be the case, but I wanted to check). And two - how tall are you? 115 is a pretty reasonable weight for someone 5 foot ish, but not if you are 6'2".

You say no immune system - what's your white blood cell count like? or are you just getting sick with colds, etc all the time?

I wonder if whatever the source of your discomfort & inflamed GI is responsible for the fact you can't absorb nutrients.

And lastly - what are your symptoms that haven't gone away...?

I am sorry that this is such a puzzle for you. Hopefully you can get some more info and suggestions here.

[domesticactivist]

Great questions from tictax707. Also, are you taking any supplements or medications?

[ravenwoodglass]

If you had positive blood tests before you went on the diet then you are celiac. The fact that the antibodies resolved shows that you are doing the diet well enough to at least keep the antibody levels down. Gene testing can be done but gene testing cannot firmly rule celiac in or out. There are celiacs with genes that are not one of the two typically associated with celiac.

What are you typically eating? Do you consume soy? That can be a problem for some of us. Have you eliminated gluten from your toiletries? Are you in a household with other gluten eaters? If so are you taking strict precautions to prevent CC? Do you have a significant other that consumes gluten? If you do they should do a good toothbrushing before kissing. Do you consume distilled gluten grain item like alcohol and vinegar? Many are okay with distilled gluten but some of us do react.

I hope things get figured out for you soon and that you are feeling better.

[Gemini]

Hey guys,

I feel like I've heard SO many stories about people going gluten free and experiencing relief from all their symptoms within months, but this isn't the case for me. I have been gluten free for two years and maintained as strict a diet as possible, my blood tests show no autoimmune response since I've been gluten free. In addition I've done the SCD diet and now I've identified dairy, oats, corn, and rice as problem foods. Honestly though, lately anything will make me sick to my stomach. I feel as though I am getting worse.

I've been tested for chrons but I don't have it and I have recently found put I'm hyperthyroid. I'm also deficient in most vitamins and anemic- a sign I'm still suffering from malabsorption. Oddly enough I also have high triglycerides.

At this point I have nearly no immune system, and I have been hospitalized twice in the last year. Now the doctors say I probably don't have celiac, but IBS. This makes no sense to me.

I am 20 years old, 115 pounds, I exercise when I can and eat as healthy as possible, so I should be in the group that makes a full recovery in a few months. I am confused and tired of getting no results and no answers.

Sorry for the long post, but if you have any

Experience with this please let me know.

Thanks,

Amber

If you have had positive blood work in the past for diagnosis and now are showing no autoimmune response via the same testing, then you are not consuming gluten. It wouldn't matter if others in your household are gluten eaters or if you are using toiletries which contain gluten....a negative blood panel after a positive one shows you are not being contaminated with the stuff. You are also hyperthyroid, which is associated strongly with Celiac Disease. It really does sound like you are still suffering from malabsorption so this points to Refractory Sprue. Have your doctors looked into this? I am so sorry you are suffering like this because it can be hard to pin down and doctors are just not much help with it all. They are supposed to be GI specialists and most people on this forum know more than they do. Please do not accept the bogus IBS diagnosis because your symptoms are far more serious than that.

Have you been tested at all for food allergies/intolerances? You have already identified some but there still may be something that you are reacting to and is causing you to remain ill. I still think you do have celiac disease but there is definitely another problem which hasn't been found. You should recover well on the gluten-free diet if Celiac is the only issue and you are strictly gluten-free. I hope you find some answers and keep asking questions here because this place is better than most GI offices!

[amberlink09]

oh, I am so sorry... Two quick questions: when you say as strict a diet as possible, what does that mean? Can you elaborate a little bit on possible ways gluten can be getting in? (it may not be the case, but I wanted to check). And two - how tall are you? 115 is a pretty reasonable weight for someone 5 foot ish, but not if you are 6'2".

You say no immune system - what's your white blood cell count like? or are you just getting sick with colds, etc all the time?

I wonder if whatever the source of your discomfort & inflamed GI is responsible for the fact you can't absorb nutrients.

And lastly - what are your symptoms that haven't gone away...?

I am sorry that this is such a puzzle for you. Hopefully you can get some more info and suggestions here.

Hey, when I say as strict a diet as possible I mean I do go out to eat from time to time (only at places with gluten-free menus) but I am in college so eating out is just part of being social. I make almost everything I eat from scratch because I can't afford prepackaged Gluten Free items, and I check any new items I eat for gluten.

I'm 5'2" so I'm pretty average in weight, I only wish I was tall!

My white blood cell count always seems to be normal whenever I've had it taken, which in the past year has been during the times I've had mono and kidney infections as well as at a regular check up. I am sick all the time with colds, bronchitis, strep, etc. its almost never ending. My more serious illnesses have been mono last November, and two kidney infections in December and two weeks ago. The kidney infections seem to come out of nowhere and end up putting me in the hospital for a few days.

I still suffer from alternating C and D, that never went away after starting the diet. What's gotten worse in the last few months is a LOT of bloating (I look pregnant at time and the bloating can make me gain over 5 lbs a day) and horrible abdominal pain usually centered around my belly button/lower stomach. The pain spreads sometimes though and even begins to put my entire back in pain. The only way I am able to distinguish between my regular pain and when I've been "glutened" is because I get a lot of brain fog after being glutened.

I just don't know what to make of all of this! Finding a good doctor is really tough too because they all treat symptoms instead of looking at all of this as part of one illness, it gets very frustrating!

I have thought about the possibility of refractory Celiac but I hear its really uncommon. I would like to get another endoscopy but I think I need to catch up on all of my other medical bills first.

Thank you guys for your input!

[amberlink09]

If you have had positive blood work in the past for diagnosis and now are showing no autoimmune response via the same testing, then you are not consuming gluten. It wouldn't matter if others in your household are gluten eaters or if you are using toiletries which contain gluten....a negative blood panel after a positive one shows you are not being contaminated with the stuff. You are also hyperthyroid, which is associated strongly with Celiac Disease. It really does sound like you are still suffering from malabsorption so this points to Refractory Sprue. Have your doctors looked into this? I am so sorry you are suffering like this because it can be hard to pin down and doctors are just not much help with it all. They are supposed to be GI specialists and most people on this forum know more than they do. Please do not accept the bogus IBS diagnosis because your symptoms are far more serious than that.

Have you been tested at all for food allergies/intolerances? You have already identified some but there still may be something that you are reacting to and is causing you to remain ill. I still think you do have celiac disease but there is definitely another problem which hasn't been found. You should recover well on the gluten-free diet if Celiac is the only issue and you are strictly gluten-free. I hope you find some answers and keep asking questions here because this place is better than most GI offices!

Hi Gemini,

I agree, this forum has a LOT more information than I've found from my current GI. Right now I have finally found a GI who doesn't think I'm crazy (which is hard to do) so I am going to try to stay with him and push for more tests. Refractory Sprue hasn't been discussed yet, so far I was treated with Xifaxan for a possible Intestinal bacterial overgrowth (no results) and I had an x-ray test done for Chron's disease (it came back normal). I've recently started working with a naturopath/nutritionist though and he is the one who FINALLY tested my thyroid and my vitamin levels, I'm planning to take these results to my GI because I know that IBS is not associated with malabsorption.

I was tested for allergies after I was diagnosed with Celiac, and I don't have any, I've just found that over time I grow more and more sensitive to certain foods. I have been thinking about getting another allergy panel done but I wasn't sure if I can develop more allergies over time or not.

Thanks for your advice!

[amberlink09]

You guys are replying faster than I can keep up! I do take supplements: I take a b-complex along with sublingual B12, magnesium, digestive enzymes, probiotics, Omega 3-6-9, I also sometimes take a multivitamin and I'm about to start taking Iron and Calcium, though I'm worried it will aggravate my constipation.

My typical breakfast consists of a smoothie with soaked Quinoa flakes for a good protein boost and coconut milk kefir for more probiotics. Snacks are fruits and veggies, pretzels and almond butter, or lunch meat. The rest of my meals usually consist of a lean meat (chicken most of the time) and a salad or two sides of vegetables, sometimes a starch. Occasionally I'll eat pasta which is generally spaghetti or butternut squash sauce and sorghum noodles (I can't tolerate many of the other ones). I don't eat as many grains as I want to but without rice I'm really just left with quinoa, which I'm not a big fan of.

I have given up soy for about 5 months before but had no results. I was on SCD for 5 months (no grains, sugar, starch, beans, etc.) but still saw no results.

Thanks again everyone!

[GlutenFreeManna]

Hey, when I say as strict a diet as possible I mean I do go out to eat from time to time (only at places with gluten-free menus) but I am in college so eating out is just part of being social. I make almost everything I eat from scratch because I can't afford prepackaged Gluten Free items, and I check any new items I eat for gluten.

I'm 5'2" so I'm pretty average in weight, I only wish I was tall!

My white blood cell count always seems to be normal whenever I've had it taken, which in the past year has been during the times I've had mono and kidney infections as well as at a regular check up. I am sick all the time with colds, bronchitis, strep, etc. its almost never ending. My more serious illnesses have been mono last November, and two kidney infections in December and two weeks ago. The kidney infections seem to come out of nowhere and end up putting me in the hospital for a few days.

I still suffer from alternating C and D, that never went away after starting the diet. What's gotten worse in the last few months is a LOT of bloating (I look pregnant at time and the bloating can make me gain over 5 lbs a day) and horrible abdominal pain usually centered around my belly button/lower stomach. The pain spreads sometimes though and even begins to put my entire back in pain. The only way I am able to distinguish between my regular pain and when I've been "glutened" is because I get a lot of brain fog after being glutened.

I just don't know what to make of all of this! Finding a good doctor is really tough too because they all treat symptoms instead of looking at all of this as part of one illness, it gets very frustrating!

I have thought about the possibility of refractory Celiac but I hear its really uncommon. I would like to get another endoscopy but I think I need to catch up on all of my other medical bills first.

Thank you guys for your input!

Have you replaced your old non-stick pans, old wooden spoons, old toaster, old wooden or p[lastic cutting boards, etc since going gluten free? Do you live with gluten eating roommates or family? Do you still go out to bars and pizza places where there is a high amount of gluten floating around? Do you have a boyfriend you kiss after he eats gluten?

Sinc egoing gluten free, do you eat a lot of dairy, a lot of soy, a lot of beans or a lot of raw veggies? all these things have been known to be possible intolerces for people when they go gluten free. Have you tried keepign a food and symptom journal to see if you can figure otu other problem foods or sources of cc?

[GlutenFreeManna]

You guys are replying faster than I can keep up! I do take supplements: I take a b-complex along with sublingual B12, magnesium, digestive enzymes, probiotics, Omega 3-6-9, I also sometimes take a multivitamin and I'm about to start taking Iron and Calcium, though I'm worried it will aggravate my constipation.

My typical breakfast consists of a smoothie with soaked Quinoa flakes for a good protein boost and coconut milk kefir for more probiotics. Snacks are fruits and veggies, pretzels and almond butter, or lunch meat. The rest of my meals usually consist of a lean meat (chicken most of the time) and a salad or two sides of vegetables, sometimes a starch. Occasionally I'll eat pasta which is generally spaghetti or butternut squash sauce and sorghum noodles (I can't tolerate many of the other ones). I don't eat as many grains as I want to but without rice I'm really just left with quinoa, which I'm not a big fan of.

I have given up soy for about 5 months before but had no results. I was on SCD for 5 months (no grains, sugar, starch, beans, etc.) but still saw no results.

Thanks again everyone!

Okay you answered a lot of my questions with this post while I was writing my post...Quinoa was not good to me. I had symptoms worse than with gluten when I tried Quinoa so you might consider droppign that. coconut milk is good for you BUT it is a natural laxative--it's possible you are over doign the coconut milk or your body just can't handle that. It also sounds like you eat A LOT of raw veggies and raw fruit. That could be the source of your bloating. Some other things for you to look into is issues with fructous or issues with nightshades.

Also double check the brands of vitimins and supplements you are taking to make sur ethey are gluten-free. Just becaus ehtey say gluten-free ont he label does not mean they are always safe. Vitamins that have wheat grass or barely grass in them are not safe. also be sure to check all your othe rno food products to see they have gluten. If it's anythingthat you touch with your hands it has the potential to get into your mouth.

[Kim69]

Amberlink

Have you been tested for fructose malabsorption? I have this. It was diagnosed by a breath test over a 3 period. I avoid a lot of fruit, veggies especially onions! The malbsorption creates lots of gas, causes pain and D (for me, but for others symptoms may be a bit different).

I investigated fructose and lactose malabsorption when I wasn't getting better. In fact I still have pain but perhaps i dont follow the diet as well as I should. I certainly know if I have had a meal (made by my mum last time it happened) with lots of onion.

[krystynycole]

Have you call the manufacturer about your vitamins? They are "hidden" in the ingredients.

Also have you checked you make up and hair products? This was big shock for me.

My husband thinks I'm crazy, but I also recheck everything when I go shopping. It seems that unless the company is targeting gluten free consumers, they change supply companies without a change to their labels which means those "natural flavors" could be changed and possibly contain gluten.

[beachbirdie]

Hey guys,

I've been tested for chrons but I don't have it and I have recently found put I'm hyperthyroid. I'm also deficient in most vitamins and anemic- a sign I'm still suffering from malabsorption. Oddly enough I also have high triglycerides.

Sorry for the long post, but if you have any

Experience with this please let me know.

Thanks,

Amber

You've gotten a lot of great answers, I hope you are able to get to the bottom of your problems. I'm new here and new to the idea of celiac, so won't even try saying anything on that one but:

My question is relating to thyroid. I don't see any mention of what they are doing to treat your hyperthyroid, how hyper are you? Are you being treated for it? Do you have Graves disease? Hyperthyroid can really mess you up.

I am also autoimmune thyroid, I have Hashimoto's disease so I always take an interest when I see someone else struggling with it!

[thleensd]

It's not just you. It's been two years and two months for me. I've been very strict about my gluten-free, including non-food products... Also eliminated corn, soy, nearly everything artificial or overprocessed, sorghum, and experimented with eliminating quite a few other things.

That being said, I was pretty bad (hospital stay) by the time I was diagnosed. I've been to every western and eastern doc I can afford, and now I'm just trying to eat as purely as possible, and trying to balance rest with getting stronger. I'm putting my fingers in my ears and saying "LALALALALALAICAN'THEARYOU" to the word refractory.

I don't have much to offer, just know you're not alone. Keep your chin up, and keep searching for answers.

[amberlink09]

Hey guys,

Thanks for all of your help! I was diagnosed the day before I moved to college, then I lived in the dorm for a year and moved into an apartment with a brand new kitchen (no one had ever used it before) and i bought completely new pots, pans, utensils, etc. So no cross contamination issues there. I am very diligent about reading all labels, I make my boyfriend brush his teeth and mouthwash before he kisses me, and I've checked all of my vitamins. I really don't think I'm being glutened though, because when I am glutened I get very tired and really can't think straight, plus all of the stomach issues.

For my thyroid I have just started taking iodine, I am currently working with a naturopath so he isn't technically allowed to diagnose illnesses, just treat them. I've never found a good regular doctor but I do need to get a little more information on my thyroid. The strange thing is that my T4 was high (indicative of hyperthyroid) but my T3 uptake was low (indicative of hypothyroid). So I'm very confused about what that might mean. My naturopath is actually related to me though so I trust him to figure out what is going on with me. I am also on supplements for pituitary support, and liver, kidney and gallbladder function. With the thyroid dysfunction my emotions are really just all over the place (anywhere from depressed to extremely anxious and stressed) my heart races all the time and I have a lot of trouble sleeping at night.

As for my diet, I'm definitely trying to eat less salad and raw veggies, because I've realized it definitely contributes to my stomach problems, and it doesn't seem to be well digested. I also try not to eat many grains because they bother me in large quantities, though almost everything does lol. I haven't looked into fructose malabsorption yet, but I think it will be my next step if things don't get better soon. I haven't had a follow up with my GI since I had my barium study so I need to do that so we can see what is next. I know I need to take him all of my blood test results too so he can get an idea of what's going on.

I really don't understand why I am more sick though because I was told I have "borderline" celiac. My immune response was abnormal but not extremely high, and my biopsy was abnormal but my GI said there wasn't much damage done to the villi. This is extremely confusing to me because I had been sick for at least 6 years before receiving a diagnosis.

I also went to my gynecologist on Friday because sex has also become painful for me in the last few months, he checked for infections and everything but that all came back good. I am going in for a sonogram tomorrow to investigate the possibility of endometriosis or ovarian cysts (which seems unlikely since I've been on birth control for four years). He said that if there is something wrong though it should be fixable since I am young. I'm only 20 and the possibility of endometriosis is very scary to me, I just want to be better by the time I am able to have kids. Does anyone have any experience with this? I may start a new topic on it.

Thanks again!

[amberlink09]

Just an update since you guys have been so helpful to me!

I went to the OB/GYN today to get a sonogram to check for cysts etc. and everything looks good, but my doctor suspects it might be endometriosis. I NEVER would have suspected this, I was so busy looking at my stomach problems to get a diagnosis, but I've reviewed a lot of information and it seems highly likely that this is the source of my pain. I am going to get a laparoscopy in about a month so that I can get an official diagnosis, and I am really hoping that since I am young it will be easily treatable. I think one of the scariest things for me to hear is that I may not be able to have kids one day, but I am trying to look at the positive! I hope this might help some of you out there that are having the same symptoms as me.

-Amber

[Debbie B in MD]

Amber, I am glad you getting some answers. Just a word of encouragement. My niece has endometriosis and the 2 most beautiful, healthy children in the world (not quite as beautiful as my own )Please let us know how your laproscopy goes. I hope this is an answer for you and that you will heal well.