12 Weeks Of Hell

[Chris E]

Hi, I'm new to this forum and looking for some advice. I have been unwell for 12 weeks now and have had many different symptoms occuring at different times and was wondering if they could be due to celiac. I first started with a feeling of constant tiredness which has gradually become worse over the weeks. This was then followed with severe Diarrhea and an abnormnal feeling (unable to concentrate, focus, diziness etc). In the 12 weeks that i have been unwell i have lost over 2.5 stone. When the diarrhea cleared up and stools started to form again they constantly used 2 float in the bowl and i was passing a lot of undigetsed food. I have symptoms of tingling in my legs, pins and needles in my hands and feet and have also experinced a bit of bone pain (mainly my wrists and arms). I have been to my doctor a number of times and have had many blood tests taken and have been referred to a GI who is going to carry out an endoscopy on the 6th October. My doctor has put many of my symptoms down to anxiety/depression and has prescribed a course of anti-depressants, but i can't help thinking that she has got it wrong. She did suggest to me that i could have celiac disease and ran a blood test which came back negative. After doing so much research on these message boards am i right in thinking that i still may be gluten intolerant even thought i had a neagtive blood test. My symptoms seem 2 match a lot of those which i have read. When i questioned my doctor about this she assured my that the blood test was 90% accurate and said that it was exteremly uncommon fior someone of my age to develop Gluten intolerence (i'm 19). I ahve listed all of my symptoms below and would be grateful for any advice at all because i am now really fed up of feeling this way (especially the brain fog symptom). Can anyone explain to me wot it feels to have brain fog and how long does this last?

Chris

Symptoms include:

dirahhea

floating stools (sometimes normal though)

brain fog

Anxiety

Bone Pain

Joint pain

Discolouring of teeth

Mouth ulcers

Tension headaches - doctor says this is anxiety

white flecks on fingers

Leg tingling

Pins and needles in hands and feet

Constant tiredness

Weight loss

[Guhlia]

Ugh... Doctors... They make me wanna scream!!! Okay, it is extremely COMMON for someone of your age to develop Celiac disease. I developed Celiac at 27, my friend at 22. Also, your symptoms are CLASSIC for Celiac Disease. They mimic my symptoms almost exactly. It sounds to me that you may very well have Celiac. Negative blood tests are common. I've had negative bloodwork as well, but I am still DEFINITELY a Celiac. You could try going the route of Open Original Shared Link, it's a stool test for Celiac, much more accurate than the blood tests, plus it will tell you if you carry the Celiac gene or the gluten intolerance gene.

Please remember, if you are getting a scope done, that may come back negative as well. This does not necessarily mean that you don't have Celiac or a gluten intolerance. There are plenty of people who get negative scopes and still benefit immensly from the gluten free diet (which, BTW, isn't too bad once you get used to it). With the scope, they biopsy your tissue and it's very possible for them to miss areas of villous atrophy.

Brain fog varies for each person. For me it feels a little bit like being VERY mildly stoned. It makes me forgetful, hazy, kind of like I have a bad cold (with no other symptoms). I forget everything, I feel like my IQ has dropped 30 points, I have a hard time getting ideas out, I have a hard time processing new information... It's kind of like ADD with a major cold just after getting a contact buzz. Ha.

Glad you found this board. It's a great resource. Even if all your testing comes back negative, you may still want to give gluten free a shot. I remember how bad I felt while still eating gluten. I can't imagine going back there again. I hope you start feeling better soon. One more thing, DO NOT GO GLUTEN FREE BEFORE YOUR SCOPE OR YOU MAY SKEW RESULTS!!! Good luck! Let us know how things turn out.

[Canadian Karen]

Hi Chris! Welcome to the board!

From the symptoms you have posted, it certainly sounds like celiac, or at the very least, gluten intolerence, could be the problem. There are dozens on this board who have had incredible success on the gluten free diet, even though their bloodwork was negative. Keep in mind that it is becoming widely accepted that there are alot of false negatives out there and that although the antibodies are not high enough to register, the damage is still being done. Also, it is becoming increasingly aware that most labs don't even run the proper, more accurate bloodtests.

I would suggest trying gluten-free for awhile and see what your response is. There are tons of really great knowledgeable people on this board to lean on for support and guidance. Also, if you contact one of our members "nini", she has a gluten free starter kit she has put together with great info to help you get started....

The second best thing you could do is read, read, read. There is an immense wealth of knowledge on this board and previous threads do wonders in educating people to the damage gluten can do......

Again, welcome!

Karen

Here's the link to the Newbie Survival Kit from nini:

Open Original Shared Link

Karen

[happygirl]

Chris,

Welcome to the board. I am sorry to hear that your health is not doing so well! How frustrating for you.

It is good that you are getting an endoscopy. Here are a couple pieces of advice that I 'wish' I had known during my diagnosis/search for my problem:

If you are having an endoscopy done, make sure that you are still eating gluten! If you go gluten free (and have gluten issues), your body begins to heal....and the endoscopy comes back negative. I learned this the hard way....my blood tests were positive, but my quack of a GI told me to go gluten-free before the procedure. I was gluten-free for one month....my tests were negative.

Make sure that you talk to your dr. before the procedure (or call up and talk to the nurse) and express your concerns to ensure that MULTIPLE biopsies, in multiple sites, are taken. Celiac damage, if any, can be very patchy. If they only take one sample, the chances of finding damage are like a needle in a haystack.

Dr. Green is a leading Celiac researcher/physician at Columbia University. He recently co-authored a book, "Celiac Disease: A Hidden Epidemic"...I highly recommend it.

Quoted from it:

"Studies have shown that:

You can have celiac disease and still have negative blood tests (these patients tend to have less flattening of the villi and are often harder to identify and diagnose)

You can have negative blood tests and develop celiac disease later in life (This situation may be seen in younger children as well as young adults)

If you are not ingesting much gluten, your antibodies can be negative and you can still have active celiac disease"

Your doctor is wrong about your age. Babies are diagnosed, children, teens, young adults, middle aged adults, older adults, and elderly adults. EVERYONE can have it...there is no marker for age. I "developed" celiac disease at age 22. There are elderly members in our support group. There are parents of very young children in our group. celiac disease affects ANYONE....there are a variety of people on this board, male/female, young/old, typical symptoms/non typical symptoms/no symptoms.....Celiac is known as a medical "chameleon" in that it is complicated and has so many faces.

Celiac was once thought to be a rare, strange disease.... 1 in thousands of people was thought to have it. Now, recent research suggests that 1 in 133 American's have Celiac (Dr. Fassano's research). However, it is GROSSLY undiagnosed and misdiagnosed. This is a result of doctors who, although well-meaning, are not well-educated about Celiac.

There is a chapter in Dr. Green's book that discusses food allergy vs gluten intolerance vs gluten sensitivity. You might not have Celiac, but a sensitivity or allergy.

Remember, these tests (especially the biopsy) can NOT rule OUT Celiac....they can only positively rule it in. I have a friend who tested negative on bloodwork but had her biopsy and it was positive! I had positive bloodwork/negative biopsy. Others have been positive on both; others negative on both. Doesn't necessarily make sense, but it demonstrates that just because a test is great for one person doesn't mean the world to another.

On the other hand, if everything still comes back negative....I agree with Karen's advice. Try going gluten free. Keep a food diary. See what happens. A valuable piece of advice that I learned here was that you don't need a dr's diagnosis to not eat something. I have not tested positive for certain foods, but I eat them and get sick....so I don't eat them anymore. Its hard, but you seem like you are really searching for answers, and depending on the path of your results, it might be something to consider.

I hope this helps. Please feel free to ask any questions. Keep us updated on your situation....I certainly hope that you find answers (whatever they may be!) to feel better.

Laura

[Chris E]

Thank you every1 for your advice. I will continue my normal diet until after my endoscopy and will then try going gluten free reagrdless of the results. I ate pasta last night and within an hour of consuming it the big D started. Is this reaction time normal? One thing that still slightly bothers me is that when i met with the Gastroentinologist last week and told him my symptoms he said that my joint pain could be linkied with my bowel/stomach problems, but the leg tingling and pins and needles in my hands and feet would not be linked. Is the guy wrong? Also, is it common to develop tension/migrane headaches and also indigestion problems as a consequence of celiac/gluten intolerence? Sorry to ask so many questions.

Chris

[aikiducky]

Chris, the tingling could be a symptom of vit B12 deficiency which is very common with celiac. You should have your levels checked. The headaches and indigestion are also quite typical symptoms. All in all yuo sound like a really typical case of celiac, so I think it's well worth it to try the diet after the testing is done.

Reaction time after eating something with gluten varies from person to person. I usually react a bit later than that, but one hour is not uncommon from what I've read hear at the forum...

Pauliina

[gfp]

When i questioned my doctor about this she assured my that the blood test was 90% accurate and said that it was exteremly uncommon fior someone of my age to develop Gluten intolerence (i'm 19).

Yes of course its uncommon if MD's don't test because ... its uncommon!

The accuracy of testing depends on many factors... most important are having a FULL panel AND eating gluten.

See

Open Original Shared Link

[Guest nini]

you've gotten great advice so far, I hope you checked out my newbie survival kit.

I had the numbness and tingling in my legs, sometimes it was so bad it would knock me to the floor because it hurt to stand. You sound like classic Celiac and I def. reccomend trying the diet regardless of your test results, but they are correct in advising you to continue eating gluten until after your endoscope so that you stand a better chance of being dx'ed. If you have only been going through this for 12 weeks, you may not have accumulated enough damage yet for it to show up on testing.

Yes an hour after eating is a normal reaction time, but really you can react within minutes or up to several days later.

welcome to the board!

[rinne]

Regardless of what the tests say or don't if you are having a reaction to pasta like that it seems clear your body is saying, "NO". Trust your gut.

I'm sorry to hear you are feeling so rotten and hope you can get some answers and relief soon.

[Chris E]

Thank you every1 for your advice. I'm all over the place at the moment with how i am feeling. The brain fog and tingling in my legs is driving me crazy. Is it common to feel dizzy with the brain fog? Sorry to ask so many question, but this is new to me so i a,m still learning all of the facts.

Chris

[dionnek]

I didn't develop the headaches until after I went gluten free, but I had all the other same symptoms (for years). I was diagnosed at 33 (just recently), but I think my pregnancy 2 years ago triggered the celiac. That's when my major symptoms started. When/if you do go gluten free, remember to check all your vitamins, meds, etc. - anything that goes in your mouth. You'd be surprised at where the gluten hides! And, don't give up if you aren't feeling better after a few weeks gluten-free - I've been gluten-free for 4 months and still don't feel ANY better, but I had "significant" damage to my intestines per the biopsy so I'm thinking it will take me a year or so (hope not!) to heal. I've heard 1-2 years is not uncommon

[Canadian Karen]

Chris,

With regard to your doctor saying the tingling and numbness would not be related to celiac, I would suggest you print this out and give him a copy in hopes of educating him as to the wide variety of symptoms this disease has.....

https://www.celiac.com/st_prod.html?p_prodi...-31106599711.42

Karen

[Chris E]

Chris,

With regard to your doctor saying the tingling and numbness would not be related to celiac, I would suggest you print this out and give him a copy in hopes of educating him as to the wide variety of symptoms this disease has.....

https://www.celiac.com/st_prod.html?p_prodi...-31106599711.42

Karen

I think i might just do that, but i haven't been diagnosed with celiac as such.

[Chris E]

I finally had my endoscopy and colonoscopy today and according to my GI, there was no indication of anything major. I was slightly hoping to be told that i am celiac becasue it would explain all of my syptoms i have now been experiencing for 16 weeks now - weight loss, stomach discomfort, D, large stools, passing undigested food, tiredness, dizziness, brain fog, migrane headaches and the annoying tingling in my legs. The GI did say that he was not too concerned about a gluten intolerance because the bloodwork was negative. I really do not know what to do now about my symptoms and i am rather worried and puzzled as to what to do next.

[par18]

I finally had my endoscopy and colonoscopy today and according to my GI, there was no indication of anything major. I was slightly hoping to be told that i am celiac becasue it would explain all of my syptoms i have now been experiencing for 16 weeks now - weight loss, stomach discomfort, D, large stools, passing undigested food, tiredness, dizziness, brain fog, migrane headaches and the annoying tingling in my legs. The GI did say that he was not too concerned about a gluten intolerance because the bloodwork was negative. I really do not know what to do now about my symptoms and i am rather worried and puzzled as to what to do next.

Chris,

Have you actually gone gluten free to see what happens? Since you have had the tests you cannot change anything.

tom

[Terch]

Are these white flakes underneath the nail bed or are they right on the nail itself?

Thanks

[IrishKelly]

Hi, I'm new to this forum and looking for some advice. I have been unwell for 12 weeks now and have had many different symptoms occuring at different times and was wondering if they could be due to celiac. I first started with a feeling of constant tiredness which has gradually become worse over the weeks. This was then followed with severe Diarrhea and an abnormnal feeling (unable to concentrate, focus, diziness etc). In the 12 weeks that i have been unwell i have lost over 2.5 stone. When the diarrhea cleared up and stools started to form again they constantly used 2 float in the bowl and i was passing a lot of undigetsed food. I have symptoms of tingling in my legs, pins and needles in my hands and feet and have also experinced a bit of bone pain (mainly my wrists and arms). I have been to my doctor a number of times and have had many blood tests taken and have been referred to a GI who is going to carry out an endoscopy on the 6th October. My doctor has put many of my symptoms down to anxiety/depression and has prescribed a course of anti-depressants, but i can't help thinking that she has got it wrong. She did suggest to me that i could have celiac disease and ran a blood test which came back negative. After doing so much research on these message boards am i right in thinking that i still may be gluten intolerant even thought i had a neagtive blood test. My symptoms seem 2 match a lot of those which i have read. When i questioned my doctor about this she assured my that the blood test was 90% accurate and said that it was exteremly uncommon fior someone of my age to develop Gluten intolerence (i'm 19). I ahve listed all of my symptoms below and would be grateful for any advice at all because i am now really fed up of feeling this way (especially the brain fog symptom). Can anyone explain to me wot it feels to have brain fog and how long does this last?

Chris

Symptoms include:

dirahhea

floating stools (sometimes normal though)

brain fog

Anxiety

Bone Pain

Joint pain

Discolouring of teeth

Mouth ulcers

Tension headaches - doctor says this is anxiety

white flecks on fingers

Leg tingling

Pins and needles in hands and feet

Constant tiredness

Weight loss

AHHHHHHHHHHHHHH!!!!!!!! I just want to ring Dr's necks at times, yes, YOU HAVE A GLUTEN PROBLEM!! Those are ALL symptoms of a gluten problem!

[rinne]

I have or have had many of your symptoms and going gluten and dairy free has improved my life by 50%, I've been gluten free for five months now, it has also made it clear to me that I have other problems. I am looking at Lyme Disease which may also manifest with the same symptoms, have you heard of Lyme?

A gluten free diet may be used as a diagnostic tool for Celiac disease, are you thinking of trying it?

[kbtoyssni]

Brain fog - wow. For me that was almost the hardest symptom to deal with. I'm an engineer so I need to be able to think. And all of a sudden I couldn't understand anything. I'd see words on the page and not be able to figure out how they fit together to make a sentence. I'd balance my checkbook and the next day I'd realize I added the numbers all wrong, like I'd start adding the ones column to the hundreds. People would talk to me and I'd stare blankly because I couldn't focus on what they were saying.

I did get dizzy, too. I had pretty bad vertigo.

If I were you, I'd go gluten-free and see if you feel better. If so, you've got your answer. (But note that if you do go gluten-free you won't be able to have traditional celiac testing later on unless you start eating gluten. Your body won't be producing antibodies or have intestinal damage unless you're eating gluten.) And celiac can show up at any age. I was diagnosed at 23, but I think I'd had it since I was 16ish.