Well, Now I'm Really Confused!

[penguin]

I don't have D! At all! I got it once last week, and that was pretty horrible, because I had an accident in public. I've never had that happen! And it was green. Sorry, that was an overshare.

I've gained 10 lbs in 2 weeks (this is NOT needed or appreciated weight)

I seem to be functioning normally digestively, something I couldn't do in the last 3 years or during the 4 months of being gluten-free... The only issue seems to be some extra gas and D cramping without D.

I seem to be having neuro problems, I keep hip-checking things, like the door jamb, which is something I stopped doing a long time ago. It's like my trajectory is off. I'm also feeling increasingly stoned.

For example, I ate pizza for lunch on Friday and I was afraid I was going to get pulled over for drunk driving, because I felt drunk. (haven't had a drop)

I'm wondering if the neuro stuff is psychosomatic, though. I'm just so confused!

Has anyone else done a gluten challenge and had this kind of experience? I still have another 10 weeks to go to hit the 3 month mark! And I know I'm eating enough gluten, at least...

[angel-jd1]

Sounds like you are having symptoms, just not "traditional" symptoms. I have a list of symptoms that was compiled a couple of years ago by someone on this board (forgive me as I don't remember who because people come and go so frequently on here) I am sure that you can pick out a few things that you are still seeing symptom wise in yourself even if they are not the traditional symptoms. I hope it helps you.

-Jessica

Most of this was compiled from the aafp.org and celiac.com websites info on celiac symptoms.

List of symptoms associated with Celiac Disease (also known as Celiac Sprue and Gluten Intolerance):

Lassitude (a term describing a feeling of tiredness, weakness or exhaustion)

Inanition (exhaustion, as from lack of nourishment)

Depression

Fatigue (often chronic)

Irritability

Fuzzy-mindedness after gluten ingestion

Dental enamel defects (lots of dental cavities due to weak enamel)

General malnutrition with or without weightloss

Any problem associated with vitamin deficiencies

Diarrhea

Constipation

Lactose intolerance

Flatulence

Anorexia

Nausea

Vomiting

Burning sensation in the throat

Abdominal pain and bloating

Borborygmi (audible bowel sounds)

Abdominal distention

Steatorrhea (fatty stools that float rather than sink)

Foul smelling stools

Bulky, greasy stools

Anemia (iron deficiency)

Hemorrhagic diathesis (bleeding disorder)

Osteoporosis/osteopenia (bone loss or thinning)

Bone pain (especially nocturnal)

White flecks on fingernails

Short stature (due to slow growth)

Arthritis

Rheumatoid arthritis

Arthralgia (pain in the joints)

Tetany (spasms and twitching of the muscles)

Parasthesia (abnormal or impaired skin sensation including burning, prickling, itching, or tingling)

Amenorrhea (absence of menstrual bleeding)

Delayed puberty

Infertility

Impotence

Cheilosis (inflammation, cracking and dryness of the lips)

*Angular cheilosis (specifically cracking in the corners of the lips)

Glossitis (swollen tongue)

Stomatitis (any form of inflammation or ulceration of the mouth, such as mouth ulcers, cold sores, thrush, etc.)

Purpura (purple or red spots on your skin caused by bleeding under the skin, more common in elderly)

Follicular hyperkeratosis (corns, calluses, plantar warts, psoriasis, nail fungus)

Atopic dermatitis (a tendency towards allergies and a predisposition to various allergic reactions)

*Scaly dermatitis (inflammation of the skin, includes dandruff and topical allergic reactions)

Hyperpigmented dermatitis (can't find the definition, must have something to do with the color of the rash?)

Alopecia areata (loss or absence of hair, leaving the skin looking and feeling normal)

Edema (accumulation of serum-like fluid in the body tissues)

Ascites (accumulation of fluid in the peritoneal cavity-the space between the abdominal wall and the organs)

Selective IgA deficiency

Seizures, with or without occipital calcification

Hepatitis (inflammation of the liver, may be acute or chronic)

Dermatitis herpetiformis (skin rash characterized as intensely itchy skin eruptions like red bumps and blisters. Burning, stinging and itching is very bad. It appears in groups around the body, most often on the head, elbows, knees, and buttocks, much like the lesions of Herpes which is why the name is herpetiformis-meaning "like herpes". Must be diagnosed by a doctor. Only occurs in celiac patients.)

Liver disease

Xerophthalmia (an eye disorder which causes the conjunctiva and cornea to become abnormally dry)

Night blindness (inability to see well in dim light)

Thyroid disease

Unexplained neuropathic illnesses, including ataxia and peripheral neuropathy

*Peripheral neuropathy (disease, inflammation and damage to the peripheral nerves, which connect the central nervous system to the sense organs, muscles, glands, and internal organs. Damage to sensory nerves may cause numbness, tingling, sensations of cold, or pain, often starting at the hands or feet and moving toward the body center. Damage to the nerves of the autonomic nervous system may lead to blurred vision, impaired or absent sweating, headaches, episodes of faintness associated with falls in blood pressure, disturbance of gastric, intestinal, bladder or sexual functioning, including incontinence and impotence. In some cases there is no obvious or detectable cause)

*Ataxia (incoordination and clumsiness, affecting balance and gait, limb or eye movements and/or speech, making one appear as if they were drunk)

Dementia

Diabetes mellitus type 1

Sjogren's syndrome (eyes, mouth, and vagina become extremely dry)

Collagen disorders

Down syndrome

IgA neuropathy

Fibrosing alveolitis of the lung (body produces antibodies against its own lung tissue, creates a dry cough and breathing difficulty upon exertion)

Hyposplenism, with atrophy of the spleen (underactive spleen)

Pancreatitis (inflammation of the pancreas)

Lymphoma (any group of cancers in which the cells of the lymphoid tissue multiply unchecked)

Leukopenia (abnormal decrease in white blood cells, often reducing immune system function)

Coagulopathy (blood clotting disorder)

Thrombocytosis (low blood platelets/damaged platelets, causing large amounts of bruises due to uncontrolled bleeding under the skin)

Melanosis (black or brown discoloration of the colon, usually due to chronic constipation)

Erythema nodosum (red-purple swellings on the legs and sometimes arms, with fever and joint pain)

In children:

Failure to thrive

Irritability

Paleness

Fretfulness

Inability to concentrate

Emotional withdrawal or excessive dependence

Nausea

Pale, malodorous, bulky stools

Frequent, foamy diarrhea

Wasted buttocks

Anorexia

Malnutrition:

*With protuberant abdomen (with or without painful bloating)

*Muscle wasting of buttocks, thighs, and proximal arms

*With or without diarrhea

(as well as any number of the above diseases and disorders)

Additional information:

Reactions to ingestion of gluten can be immediate, or delayed for days, weeks or even months.

The amazing thing about celiac disease is that no two individuals who have it seem to have the same set of symptoms or reactions. A person might have several of the symptoms listed above, a few of them, one, or none. There are even cases in which obesity turned out to be a symptom of celiac disease. list from celiac.com message board

[penguin]

I don't really doubt that I have a gluten problem, my aim is to confirm celiac. My dr dx'ed it on dietary response and inconclusive bloodwork, but I'm not having that dx stand on my record without another opinion. Especially if I'll have insurance problems because of it.

I know I have symptoms. My lips are breaking out...AGAIN. My joints are cracking and popping like crazy, and I have flu-ey muscle pain most of the time. I know it's also not normal to have D cramps and not get D.

I'm just wondering why my symptoms are presenting themselves differently now. If I had D every day before, how come I'm not having that happen now? The D hadn't even resolved itself totally when I was gluten-free, and then suddenly, normal on wheat!

[nikki-uk]

I don't have D! At all! I got it once last week, and that was pretty horrible, because I had an accident in public. I've never had that happen! And it was green. Sorry, that was an overshare.

I've gained 10 lbs in 2 weeks (this is NOT needed or appreciated weight)

I seem to be functioning normally digestively, something I couldn't do in the last 3 years or during the 4 months of being gluten-free... The only issue seems to be some extra gas and D cramping without D.

I seem to be having neuro problems, I keep hip-checking things, like the door jamb, which is something I stopped doing a long time ago. It's like my trajectory is off. I'm also feeling increasingly stoned.

For example, I ate pizza for lunch on Friday and I was afraid I was going to get pulled over for drunk driving, because I felt drunk. (haven't had a drop)

I'm wondering if the neuro stuff is psychosomatic, though. I'm just so confused!

Has anyone else done a gluten challenge and had this kind of experience? I still have another 10 weeks to go to hit the 3 month mark! And I know I'm eating enough gluten, at least...

Don't forget Chelsea that in the time you were G.F your body probably healed some-so it's like starting from scratch again.It took more than 2 weeks for you to experience the 'classic' symptoms first time round.

Does that make sense?

I suppose what I'm saying is the 'classic' symptoms will come in time ( not that you want them!!)

My hubbies biggest symptom was alway's the brainfog/fatigue not D,and it was only a 2week spell of D at the end of around 5 yrs of brainfog that finally made the docs sit up & take notice.

By this time he had stopped driving,'cos his reactions were so slow-he seemed more than stoned!!

Gosh ten weeks seems a long way away-it would be okay if you could lock yourself away indoors!(no danger of being caught short or being seen staggering around like you're drunk )

Hope this time passes quickly for you.

Are you going for biopsy at the end of the challenge?

[CarlaB]

Don't know if this helps, but I generally don't have d while consuming a lot of gluten. That symptom only comes when I'm gluten-free and get some. I have all the other symptoms you describe while on heavy gluten. When you have your biopsy, if it comes out with no damage, maybe you can get your doctor to change your diagnosis to gluten-intolerant. If it comes out with damage, then it will remain celiac.

You will keep wondering until your biopsy ... no way around that