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Symptoms & Questions


sora

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sora Community Regular

I'll start this by saying the only thing I know for sure is that I am allergic to wheat. And this is going to be long.

I have to wait until end of June for testing and to get any official diagnosis.

I have an appointment next week with my Doctor and was hoping for some suggestions as to what to go over with her. (She is very good).

Since being on this board I am seeing a lot of the same problems in my past to what I see here with many others. I can not eat gluten so will not have the celiac test.

Symptons I have had and some I still have.

Migraines entire life

Eye irritation, blurry vision

foot cramps, toes

numb fingers, toes

Diagnosed Carpel Tunnel

Swollen fingers at the slightest use, right index finger always swollen

sore finger joints, right hand mostly

Very bad teeth problems at a very early age

low blood pressure

skinny with big pot belly

early menopause After 2nd child at 38

sensitivities all my life, soaps, scents etc

burning itch, outside below ankle bones, left side of head (no rashes)

Never seem to be comfortable, either cold or too hot, heat flashes

sleep apnea, restless leg, constant waking

sometimes when laying down I feel like my head weighs 1000 pounds and my pillow feels like cast iron. :ph34r:

also had a lot of things that I put down to aging like memory loss, dry skin etc.

Last 5 or so years less and less tolerant of high fiber foods.

This one is curious, sometimes, not often, if I try to swallow too large a bite of food (doesn't have to be too big) It get partway down and it feels like a chunk of glass. Very sharp and will bring tears to my eyes. This has only happened about three or four times a year. I mentioned this to my sister once and she said "Oh, that runs in the family, we have a narrow esophagus." I passed it off at the time as it didn't happen often. Then my father died from esophagus cancer and last year my brother had the same thing and had a surgery and so far so good. I do not have close relations with my family but I am trying to find out more info on this.

I have been gluten-free for 3 months now and have new symptoms. off and on acid reflux, lots of belly rumbling but I am putting this down to being new and not completely having it all sorted out yet re vitamins, learning intolerances etc.

Any thoughts anyone? Thanks.


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Metoo Enthusiast

I'll start this by saying the only thing I know for sure is that I am allergic to wheat. And this is going to be long.

I have to wait until end of June for testing and to get any official diagnosis.

I have an appointment next week with my Doctor and was hoping for some suggestions as to what to go over with her. (She is very good).

Since being on this board I am seeing a lot of the same problems in my past to what I see here with many others. I can not eat gluten so will not have the celiac test.

Symptons I have had and some I still have.

Migraines entire life

Eye irritation, blurry vision

foot cramps, toes

numb fingers, toes

Diagnosed Carpel Tunnel

Swollen fingers at the slightest use, right index finger always swollen

sore finger joints, right hand mostly

Very bad teeth problems at a very early age

low blood pressure

skinny with big pot belly

early menopause After 2nd child at 38

sensitivities all my life, soaps, scents etc

burning itch, outside below ankle bones, left side of head (no rashes)

Never seem to be comfortable, either cold or too hot, heat flashes

sleep apnea, restless leg, constant waking

sometimes when laying down I feel like my head weighs 1000 pounds and my pillow feels like cast iron. :ph34r:

also had a lot of things that I put down to aging like memory loss, dry skin etc.

Last 5 or so years less and less tolerant of high fiber foods.

This one is curious, sometimes, not often, if I try to swallow too large a bite of food (doesn't have to be too big) It get partway down and it feels like a chunk of glass. Very sharp and will bring tears to my eyes. This has only happened about three or four times a year. I mentioned this to my sister once and she said "Oh, that runs in the family, we have a narrow esophagus." I passed it off at the time as it didn't happen often. Then my father died from esophagus cancer and last year my brother had the same thing and had a surgery and so far so good. I do not have close relations with my family but I am trying to find out more info on this.

I have been gluten-free for 3 months now and have new symptoms. off and on acid reflux, lots of belly rumbling but I am putting this down to being new and not completely having it all sorted out yet re vitamins, learning intolerances etc.

Any thoughts anyone? Thanks.

As far as the new symptoms belly rumbling...etc. I am at 3 months gluten free also. I have found I have had to give up eggs in the last month and cut down on raw dairy. I have had new skin trouble, and I have had to be super careful about gluten, vitamins, face moisturizer. So at least to me it seems normal to have new symptoms. Once I have been more dilligent about those things, things seem to calm down again.

jeanzdyn Apprentice

These are most of my symptoms, the major noticable ones at least:

Migraines in last 5 years

Eye irritation, dryness, itching

foot cramps, toes

numbness in fingers and toes

Swollen finger joints

sore finger joints

burning pain in shoulder joints

burning sensation in back of throat with post nasal drip

Very bad tooth decay starting at an early age

sensitivities all my life, soaps, scents etc

burning itch, outside below ankle bones, upper back(no rashes)

possible sleep apnea, waking too early

gastrointestinal discomfort much of the last 5 months, before frequent distress

dry hair, a lot of breakage

stomach and intestinal rumbling

also had a lot of things that I put down to aging like memory loss, dry skin

For many years I have had intestinal "rumbling", other people have even heard the rumble or gurgle. I used to think that it was either something wrong with my digestive organs or some kind of food allergies.

I was diagnosed with celiac disease about 2 months ago.

I don't know about your newer symptoms, as I have only been gluten-free a short time. Have you talked to your doctor?

sora Community Regular

These are most of my symptoms, the major noticable ones at least:

Migraines in last 5 years

Eye irritation, dryness, itching

foot cramps, toes

numbness in fingers and toes

Swollen finger joints

sore finger joints

burning pain in shoulder joints

burning sensation in back of throat with post nasal drip

Very bad tooth decay starting at an early age

sensitivities all my life, soaps, scents etc

burning itch, outside below ankle bones, upper back(no rashes)

possible sleep apnea, waking too early

gastrointestinal discomfort much of the last 5 months, before frequent distress

dry hair, a lot of breakage

stomach and intestinal rumbling

also had a lot of things that I put down to aging like memory loss, dry skin

For many years I have had intestinal "rumbling", other people have even heard the rumble or gurgle. I used to think that it was either something wrong with my digestive organs or some kind of food allergies.

I was diagnosed with celiac disease about 2 months ago.

I don't know about your newer symptoms, as I have only been gluten-free a short time. Have you talked to your doctor?

I have another doc appt. next week.

I forgot about my back itch. That has gone since going gluten-free and my head itch/burn has finally eased off since changing shampoo, conditioner and hair gel. My head will itch all over if get CCed or have a wheat reaction but it will go away after a few days.

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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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