Celiac Still Possible?

[symptomax]

I would like to first say that i really appreciate any help that is offered.

I have been on quite a roller coaster the last several years, experiencing different symptoms and seeing numerous doctors, who can't seem to pinpoint a diagnosis and only try to treat the symptoms:

chronic fatigue

dizziness

brain fog

poor concentration

poor memory

poor vision

stomach pain/pressure

lower abdomen, sharp pain

diarrhea/constipation alternating

joint pain

flaky scalp/face - flakes and peeling

athlete's foot

toenail fungus / dark spots underneath as if lack of oxygen

needing lots of sleep (can easily sleep 14 hrs)

splitting eyelids (as if they had paper cuts)

splitting earlobes (underneath where skin connects)

These are most of the symptoms that come to mind right now. I do not know if they are all related.

I have seen different doctors. Several years ago, while I was in high school, I saw a holistic doctor who tested me for many different allergies and concluded that I had candida overgrowth, and hypothyroid. I tried getting off of suger and took armour thyroid, with mixed results. I don't know if it was the source of the problem.

When recently learning of Celiac Disease, I thought that I had finally found the cause and solution. I felt optimistic again, and found a Gastroenterologist. I told her about my symptoms, and said I would like to be tested for Celiac. She conducted the blood tests that same visit, and ordered an upper endoscopy, saying there's no reason to wait for blood results - I was showing symptoms, so she wanted to cut to the chase. Both tests returned "normal", other than the blood tests showing high iron. Was hemochromatosis a possibility? I returned for a second blood test, which she told me returned completely "normal" this time. However, I recall a blood test when I was younger, with the nurse commenting on how much iron I had. At the time, I thought that could only mean good.

Since the gastroenterologist was uninterested in any further testing for Celiac, I decided to do a gluten-free test myself to see if I improved. I went off of gluten for 4 weeks, and while it's possible that my concentration may have improved with less brain fog, I may have chosen a bad time to do the test, since I was in my last stretch of my last (intense) semester in college, with lots of stresses and little sleep.

I recently tried eating gluten as a test, expecting to have some kind of drastic reactions in stomach pains and diarrhea if gluten was in fact the culprit, but I didn't have any immediate reaction. I have since not been gluten-free.

My question is: Is it still possible that I could be Celiac or gluten intolerant? If not, do you have any other ideas about possible diagnosis? I'm feeling a little hopeless about finding the cause. I'm trying to eat organic fresh produce and eliminate fluoride from my drinking water (have read about the many ways that it is harmful - more toxic than lead!)

[leadmeastray88]

First of all, welcome to the board.

I myself have not been here long but have learned more in the past 3 weeks than over the past 4 years.

All I keep reading is how blood tests and endoscopies for Celiac are highly inaccurate, because they are both hit and miss. My friend who has Celiac had negative bloodwork and positive endoscopy, and there are members here who had negative bloodwork and negative endoscopy, but their lives have improved a great deal since going on the gluten free diet. I'm sure they'll chime in soon

The bottom line is: the diet is the best test.

If it makes you feel sick, don't eat it. Since your tests were all negative, try the diet for a few months and see how you feel. That's how long it can take to get feeling better. You may want to eliminate dairy and soy too until your stomach is healed.

If you want to know if you're gluten intolerant, try the Enterolab testing. They don't diagnose Celiac but they do stool testing to see if you carry the Celiac genes.

I completely empathize with you on how hard it is to come to a diagnosis. I too have been struggling with my health and am trying to find clarity and peace of mind (while being a full-time university student!)

Hang in there, and good luck!

Kim

[RiceGuy]

Well, your symptoms do suggest Celiac as a possibility, and yes, the tests are terribly inaccurate. It took me six months before I saw any real improvements, so I'd say give it more time.

But, it seems clear to me that you have nutrient deficiencies, and probably a candida infection. I would recommend magnesium, along with a sublingual methylcobalamin (vitamin B12) supplement. Also vitamin D3, zinc, B-complex, and a high quality coconut oil. Use the coconut oil for cooking and baking, and in place of all butter/margarine. It is solid below about 76 degrees, and melts like butter. Also take caprylic acid capsules, or other candida killer, such as Open Original Shared Link. It might also be good to get some omega-3 fatty acids too, using flax or chia seeds, or some capsules or other such product.

Do be sure to check gluten-free status of all skin/hair care products, detergents, soaps, etc. And don't lick any stamps or envelopes (the glue has gluten). Throw away any wooden utensils, and avoid non-stick pans.

Welcome, and hope you feel better soon!

[symptomax]

Wow, thank you both for your prompt replies and helpfulness!

leadmeastray - Thanks for the encouragement. How did your friend end up knowing they had Celiac? Did they eventually get a positive diagnosis?

It appears that I just may have not given the gluten free diet for long enough. I think that I should eliminate dairy and soy completely as well, because I have tended to feel bad and sick to my stomach after eating cheeses, ice cream, etc.

I can empathize with you as well - being a student, and now that I am finished bar one summer course, starting my career, is quite a challenge while struggling with health. The difficulty that I face in concentrating on the things that I need or want to these days has become quite frustrating and discouraging. My thoughts feel disconnected.

RiceGuy - Thank you for your advice and supplement recommendations. I was taking some Pau D'arco caplets last year and found that they did help clear up my skin and scalp some, but I read about the dangers of taking them long-term. In order to rid possible candida, do you recommend completely cutting out sugar along with the Candida Clear? What about fruits?

What are everyone's thoughts on raw food or vegan diets?

Thanks again!

[leadmeastray88]

Wow, thank you both for your prompt replies and helpfulness!

leadmeastray - Thanks for the encouragement. How did your friend end up knowing they had Celiac? Did they eventually get a positive diagnosis?

It appears that I just may have not given the gluten free diet for long enough. I think that I should eliminate dairy and soy completely as well, because I have tended to feel bad and sick to my stomach after eating cheeses, ice cream, etc.

I can empathize with you as well - being a student, and now that I am finished bar one summer course, starting my career, is quite a challenge while struggling with health. The difficulty that I face in concentrating on the things that I need or want to these days has become quite frustrating and discouraging. My thoughts feel disconnected.

You're welcome

She ended up having a positive biopsy when she was 11 and positive reaction to the gluten free diet. She also has Type 1 diabetes, which she was diagnosed with when she was 2. I am also contemplating being tested for diabetes.

Yes, removing soy and dairy from your diet at first would be smart, as you need to give you villi a chance to heal. You can always re-introduce them later (unless you find out you are also dairy/soy intolerant, which many people here are as well)

Yes we are very similar, you and I I am in the exact same boat as you and it has been quite a bumpy ride so far. Even the most simple tasks are exhausting and I feel like I'm 'not all there', if you know what I mean. I guess the term would be 'brain fog..' I guess I'll have to see where to go from here.

In any case, you've stumbled upon an awesome support group. There are great people here who have helped me immensely, and I hope you find all the answers you are looking for!

(hugs)

[katbird]

You're welcome

She ended up having a positive biopsy when she was 11 and positive reaction to the gluten free diet. She also has Type 1 diabetes, which she was diagnosed with when she was 2. I am also contemplating being tested for diabetes.

Yes, removing soy and dairy from your diet at first would be smart, as you need to give you villi a chance to heal. You can always re-introduce them later (unless you find out you are also dairy/soy intolerant, which many people here are as well)

Yes we are very similar, you and I I am in the exact same boat as you and it has been quite a bumpy ride so far. Even the most simple tasks are exhausting and I feel like I'm 'not all there', if you know what I mean. I guess the term would be 'brain fog..' I guess I'll have to see where to go from here.

In any case, you've stumbled upon an awesome support group. There are great people here who have helped me immensely, and I hope you find all the answers you are looking for!

(hugs)

This is the first time I have posted or replied on this site. I have come to this site for many answers before, but I haven't had to post. I have two children who have been diagnosed with Celiac. My daughter was diagnosed with Type 1 diabetes this past October, which led to the diagnosis of celiac. The rest of my kids were tested and 2 of other 3 were positive on bloodwork. The biopsies turned up positive for one and negative for the other. So I have two kids that have been positively diagnosed for celiac and have been doing well on the diet. Before my daughter was diagnosed with the diabetes and celiac, I had been seeing a doctor for some problems with my voice and throat and for some vague issues with my stomach. I told my doctor about my kids' celiac, so he added a biopsy for celiac to be added for an endoscopy thta I was already having for the throat/stomach issues. It turned up negative, as did the bloodwork for celiac. My stomach issues have worsened, and other symptoms have turned up, like mental fogginess, irritability, headaches, etc. I went abck to the doctor who ordered more bloodwork. As far as I can tell, the only test he ordered was the TTG and that came back negative s well. An abd. ultrasound came back normal. He wants to do a CAt scan now to dtermine if there is any thing. I am still not convinced that I don't have it, since everything I have been feeling could be explained by Celiac. Of course my doctors are looking at me funny because they think it is all in my head because of the stress of the last year. Really, the only thing that is stressing me out is feeling bad all the time. So it was good to see a psot from someone who is going through the same thing as me. I am pretty much thinking of just going on the gluten-free diet anyway to see if it helps, but part of me is afraid that I am missing something else. I hate to do more of these tests just to get the "everything is fine", but then I want to be sure it isn't soemething else. Any thoughts?

[CarlaB]

See if anything on this thread rings a bell. Open Original Shared Link

[nora-n]

Check out some of the genetic question postings here, your kids must have gotten the gene from somewhere.

When the doctors do blood tests and biopsies, they are only for the end stages of this autoimmune disease and only for severe villi damage.

The ttg test is calibrated to be only positive when there is severe villi damage because villous atrophy is the thing they are looking for. In the old days they would only recognize total villous atrophy but now the trend is that they aslo recognize flattened villi.

gluten does much more than flatten the villi, it is an outoimmune disease and gliadin antibodies attack the central nervous system , and also gluten triggers numerous autoimmune illnesses, like diabetes 1 for example, or thyroid disease.

Many other things are also connected to gluten intolerance, like gluten ataxia, and this diease where the sweat glands are infected and become areas with boils, forgot what it is called. Goes completely away after going gluten-free. just an example of that it is not just in the intestines and in the villi.

nora

[Legmaker72]

It's funny...I am on this site because I'm looking for answers outside of my diagnosis of Ulcerative Colitis and IBS, and you describe alot of symptoms I've dealt with for many years. There are many forms of UC and associations with skin issues as well. Have you had blood work up and a Colonoscopy done to rule out IBD?

You can look at this site.. Open Original Shared Link and see the syptoms are very similar. I believe this is why Celiac goes underdiagnosed so much is because the more common attention is on IBD/IBS.

These two sites should link together somehow.

Good luck!

[RiceGuy]

RiceGuy - Thank you for your advice and supplement recommendations. I was taking some Pau D'arco caplets last year and found that they did help clear up my skin and scalp some, but I read about the dangers of taking them long-term. In order to rid possible candida, do you recommend completely cutting out sugar along with the Candida Clear? What about fruits?

What are everyone's thoughts on raw food or vegan diets?

Thanks again!

Yes, I'd recommend cutting out all sugars, vinegars, yeasts, and fruits. I had used caprylic acid capsules, but I'd have to guess the supplements which include other things with it would work even better. Coconut oil does have caprylic acid, but unless you can afford eating enough of it, a supplement might be a better choice, especially given the added ingredients. Eventually I was able to add fruits back in slowly, but not for awhile, and still I don't eat loads of it.

Some foods are better for you raw, others not. For instance, the vitamin A in carrots is more bio-available once the carrots are cooked, though other nutrients will no doubt be diminished to some extent. Plus if your digestive system is not up to breaking down a particular food, cooking or juicing can help. Digestive enzyme supplements can be very helpful if you need them.

I don't eat any animal products, just because I feel better without them. Not everyone does however, and it is easy to end up deficient in something. It is very important to include lots of things in a vegan diet. It is far more than just excluding animal products.

[symptomax]

Wow, I was surprised to see so much activity on this thread - I have been really busy and haven't had a chance to check back.

Legmaker: I haven't yet had a colonoscopy to rule out IBS/IBD, or ulcerative colitis. My doctor had ordered a colonoscopy during my last visit, along with a string of other tests, but I didn't pursue them. She didn't communicate well after my endoscopy and testing for celiac, and I began to feel like she was most interested in capitalizing off of me. Does it seem like a strong possibility that I could have one of those? One of my cousins was diagnosed with Crohn's.

CarlaB: Thank you for your reference and pointing me in that direction, and for your energy in posting. When I saw what that thread was about, something kind of hit me - I hadn't really considered that Lyme disease could have caused all of this, but I lived in a heavily tick-invested wooded area in Missouri for over a year when I was about 9 or 10. I can recall stepping in nests and having them cover my socks and shoes, and also having to remove several across that span of time, included one from my scalp (discovering one there scared me to death! Frightens me to think of it..) Could it really be Lyme Disease? I certainly identify with the symptoms - I circled 42. Some of the symptoms seem to be in the past, or maybe I have just learned to deal with them, such as the fatigue. A symptom that I may left out of my original post - swollen lymph nodes, most noticeable in my groin joints, underneath my left armpit, and I can also feel them down my inner thighs. I feel constantly like I need to stretch, and my muscles twitch.

[symptomax]

Oh my - reading about Lyme's Disease, and had another connection. "Other discrete symptoms include loss of muscle tone on one or both sides of the face..". I have noticed the right side of my face seeming more undeveloped, and have been doing facial exercises in order to strengthen it, but I attributed this to a slight habit of smirking to one side when I was younger. Could it be Lyme?

[ravenwoodglass]

Oh my - reading about Lyme's Disease, and had another connection. "Other discrete symptoms include loss of muscle tone on one or both sides of the face..". I have noticed the right side of my face seeming more undeveloped, and have been doing facial exercises in order to strengthen it, but I attributed this to a slight habit of smirking to one side when I was younger. Could it be Lyme?

You may want to take things one step at a time. First I would do a couple of months on a strict gluten-free diet, checking everything that you injest or put on topically. The testing for celiac can have as much as a 30% false negative rate. I am one who was almost killed by the doctors relying on blood tests for diagnosis. Interestingly both of my children did show up positive on testing, this prompted us to test Dad. The best test of whether the diet is needed is the diet itself, followed strictly.

If after a couple of months you have seen no resolution of the problems then would be the time to get tested for other problems like lyme disease, Chrons etc. The celiac reaction can effect just about any system in the body and often has multiple system involvement. Since the treatment is dietary changes and not drugs if you do have something else going on the diet will not effect the course of other diseases, if they are not gluten related.

Also celiac can effect the nerves which can cause partial paralysis and cause loss of nerve function. For some of us who have not been impacted too long the effects can be reversed. Those who have ataxia, loss of balance, may not see a total remission but most will see a great improvement once the neurotoxin, gluten, is removed.

[CarlaB]

Oh my - reading about Lyme's Disease, and had another connection. "Other discrete symptoms include loss of muscle tone on one or both sides of the face..". I have noticed the right side of my face seeming more undeveloped, and have been doing facial exercises in order to strengthen it, but I attributed this to a slight habit of smirking to one side when I was younger. Could it be Lyme?

I answered this on the Lyme Disease thread.

[souzahanson]

Symptomax,

I'm currently going through the same symptoms you are right now, plus some, and I've been gluten free for years. I WOULD DEFINITELY START LOOKING INTO LYME ASAP!!!!! I just ordered the lab reqs from IgeneX labs yesterday and they should be here Monday or Tuesday. I feel 99.99% sure my western blot will come back positive for lyme. Check out the following link> www.ilads.org., this seems to be the premiere site for lyme. Carla's posts among others under the lyme section of this site has also been very helpful to me for the last few days.

[Amyleigh0007]

What about food allergies? Have you been tested? My son has Celiac and many food allergies. He doesn't have outward reactions (swelling/hives) when he eats the food he is allergic to. It's all internal, he actually gets hives and rashes in his esphagus.

[gfpaperdoll]

symptomax - please check into Hemochromatosis & get the gene test & find a doctor that is familiar with it. Are you a female? If you are & you have high iron - you need to be tested immediately. It can damage your heart, liver, kidneys, etc. & it can kill you. My father's brother died of Hemochromatosis. I have only seen people with Hemochromatosis that also have celiac. So, please keep that in mind. okay to test for lyme etc, but it is possible to have both. Actually I believe that the reason people get lyme is that their immune systems were already low due to the gluten problem.

Open Original Shared Link here is the link to the Hemochromatosis site. Are your relatives from England or Ireland? google the celtic curse & you will get some interesting history & facts.

Nora -N - the disease that you are referring to is HS or Hidradenitis Suppurativa. I am very interested where you have read any information about HS? Are you in England? was it on the internet or do you know someone with HS? thanks for any info. I know a couple of people on the celiac boards with it & I know one person personally that has it.

[symptomax]

souzahanson: The similar symptoms to mine that you are experiencing - Are they continuing symptoms that never went away with a gluten-free diet, or did they creep up later on? What is the procedure to be tested through IgeneX labs? I have been gluten free again since the 4th of july, eating mostly organic raw produce and fish. Tired of feeling so tired/weak, and all of the confusion/concentration/cloudy vision problems. I am unable to put on any weight.

Amyleigh: I was tested years ago for food/environmental allergies, and although I showed reactions for candida, dust and mold, dog and cat hair, I can't recall any specific food allergies really standing out. I've noticed throughout the years that the foods that make me feel worse are generally breads and carb-filled foods.

gfpaperdoll: When I recently went to a gastroenterologist with the purpose of being tested for Celiac, my doctor told me I had high iron (which she believes is inconsistent with Celiac, since it causes anemia). However, I proceeded to have her test for Celiac and had an upper endoscopy, but nothing showed. She tested for Hemochromatosis with the gene test, I believe, but she said it was negative. I am male, and my relatives are from France/Germany/Ireland.

I quit going to my doctor because I felt she was beginning to treat me like a cash pool, spending little time during visits and ordering every test under the sun, which I cannot afford to do anymore. Once she got a test back that showed negative, she ruled it out.