My Body Hates Me! I Just Want Someone To Talk To.

[MsHolland]

I feel hopeless and overwhelmed I’m a 29-year-old mom and newlywed undergoing testing for Celiac/NCGS, and I’m fairly certain that my dear husband is tired of hearing about it all the time…. So here I am.

 

We’ve been together for three years, and I have to tell my husband that I swear that there was a time in my life where I was “normal.” I’m always achy, have crazy GI issues (not great for our sex life), my skin does insane things, and I alternate between raging irritability, anxiety, and depression.

 

Basically, I’m not much fun to be around. We can’t eat out with friends. I don’t do fun things with my daughter. My life revolves around food and my stupid body. I just want to crawl in a hole and stay there.

 

I started my gluten trial 11 months ago after realizing that the host of symptoms that I was experiencing weren’t normal and could potentially be diet-related. I mentioned the idea of cutting out gluten to some nurse (who, in hindsight, didn’t know jack!) and she told me to go ahead, “cut it out for four weeks and then reintroduce it and see what happens.” Then I could “‘call back’ and they’d enter a gluten allergy into my file.” Yes, she seriously said that. And in my naiveté I followed her advice—little did I know that any attempt at an actual diagnosis would be thwarted from there on out.

 

Anyways, I was diagnosed with Salmonella after eating a bag of recalled lettuce in 2010. But other than that, I’ve always had an iron stomach. Nothing fazed me. But over the past four years my health has gradually deteriorated--and this has been so gradual a process that I can’t even pinpoint any onset, and I never even realized that what was happening to me wasn’t normal.

 

[in case you’re curious, here’s a list of some of my symptoms:

Neurological—anxiety (dx); depression (dx); irritability; brain fog; and memory problems. General—chronic rhinitis (dx); chronic sinus infections (dx); headaches; joint pain; weak dental enamel; fatigue; chronic dehydration; UTIs; dysmenorrhea (abnormal periods); night sweats; and water retention. GI—nausea; insatiable appetite; chronic diarrhea (dx); hemorrhoids (dx); painful gas; abdominal pain; and bloating. Skin—keratosis pilaris (dx); geographic tongue (dx); dark circles; adult onset cystic acne (dx); dry skin; eczema; and strange petechiae like rashes that look like I’m bleeding under my skin on my legs.]

 

I do yoga. I’m a runner. I eat organic. I don’t eat processed food. I haven’t had fast food in over a decade (literally). I’m 5’6”, and depending on my water retention, range from either 112-120lbs. I’ve always considered myself a healthy individual. But over the past few years that notion has been destroyed. It finally took my husband, my daughter, and my family calling me out on my “antisocialness” to realize that something was wrong.

 

I would seriously rather lie on my bed or sofa in my sweatpants than go anywhere, do anything, or see anyone. My stomach pain interfered with my quality of life that much! It was like there was a war going on inside. And my previously clear skin looked like a 16-year-olds! It was humiliating. I tried everything for that—clarisonic, topical antibiotics, prescription retinoids, creams, washes, masks, birth control—all to no avail. Over time, I guess I just assumed that multiple loose bowel movements a day was normal; that the stomach gurgling, gas, pain, and bloating were just unfortunate; and that the acne was just hormonal [P.S. That went away as soon as I cut out dairy. Quel surprise!]

 

At that point I was desperate. I did a bunch of research online, and I decided I’d try cutting out gluten like the nurse suggested. And it helped! And when I cut out dairy a few months later it was like heaven on earth! All of my symptoms either went away or started to go away. And when I reintroduced either of them, all of my symptoms came back; so I knew something was up.

 

I’ve since learned that I can’t tolerate dairy or gluten (all grains except for rice, and especially not corn). And it’s been do-able. Not fun, but do-able. [i used to consider myself a “foodie,” but not so much anymore].

 

The problem is, my husband and I are pushing 30 and we want to try to have another kid soon. Since I’m nervous about having such a restrictive diet, potential allergies, or a serious disease, as well as the impact that my health could have on a child, I talked to my PCP about it and she suggested that I see an allergist and a Gastroenterologist.

 

So I did one more reintroduction test (wheat only) just to make sure, and lo and behold, my body freaked out! Except this time I got a crazy rash that I’d never had before (which four doctors haven’t been able to visually identify). That was in February. In March I did a second reintroduction test (again wheat only). The dumb rash came back. So I went to an allergist. She did a full food allergy blood panel on me and they all came back negative. She also did a Celiac panel on me and that came back negative too (though it’s no surprise since I had only eaten one serving of gluten/day for four days, and had been gluten-free for nine months prior). My PCP told me the blood work means nothing because of that. 

 

Anyways, a little over a week ago I got sick again, only this time, it was on accident. And the dumb rash came back, except it's spread more this time. My stomach is freaking out, I’ve had diarrhea for ten days, blood in my stool for three, and am passing undigested food. Basically anything I eat goes right through me. I’m starving, dehydrated, and look and feel like death. I saw my PCP and she said I need to go in for a colonoscopy and probably an endoscopy.

 

I’m scared, frustrated, tired, and feel sort of crazy. I’m so tired of feeling like this! I don’t know what I’ll do when the GI tells me that I’m going to have to start eating gluten again! If I could hide I would. So this is where I’m at now.

 

I truly appreciate those of you who took the time to read this! I just know I need to stop relying on my husband as my sole support because it’s not very healthy, and my family just doesn’t understand. Any words of advice, insight, or comfort would be much appreciated!

 

Shannon  

 

Gluten-free since May 2013

DF since Sept 2013

Grain free (excl. rice) since Sept 2013

Allergy testing (negative) Mar 2014

[GottaSki]

Oh Shannon Sweetie -- if I could hug you, I would.

 

There are many of us that completely understand your frustration.  I personally would love to "educate" the nurse that flippantly suggested you try to remove gluten prior to testing.

 

Yet, here we are.  I do admit I gave your post a very quick read and will be back - perhaps with more info.  For now, I would like to get your post live for other members to chime in.

 

Hang in there

[MsHolland]

Oh Shannon Sweetie -- if I could hug you, I would.

 

There are many of us that completely understand your frustration.  I personally would love to "educate" the nurse that flippantly suggested you try to remove gluten prior to testing.

 

Yet, here we are.  I do admit I gave your post a very quick read and will be back - perhaps with more info.  For now, I would like to get your post live for other members to chime in.

 

Hang in there

 

Thank you, Lisa! I'll take a virtual hug

[GottaSki]

 

Thank you, Lisa! I'll take a virtual hug

 

 

We all need them once in a while.

 

I'll be back tomorrow...but am sure others will be along with a warm welcome.

 

Hang in there Sweetie : )

[cyclinglady]

Welcome! You are not alone and you are not crazy! You will get better! You just have to learn to be diligent about avoiding gluten or getting cross contaminated.

My husband went gluten-free 13 years ago at the advice of my allergist and his GP . I was diagnosed last year and my only symptom was anemia. I just went in for a routine colonoscopy and the GI doc suspected celiac disease. It was a shock! I am glad so my dx. My husband would be the first to tell you that not having a dx has been much harder in terms of support. Fortunately, I am the queen of allergies, so eliminating gluten was just one more thing to do. My transition was easier (still grieved) since I had been cooking gluten-free for 13 years.

It has taken me a year to get better. This disease requires lots of patience. My anemia has resolved, I am trying to build bone as I had a vertebrae fracture last June doing nothing! I do have lots of food intolerances and allergies that have improved, but they have not gone away yet. Now, I am diabetic and that is even worse since I used to bake the most delicious gluten-free desserts! I do get intestinal issues if I am accidentally glutened. I try hard not to eat outside the house. I travel, but I pack my own food.

Like Lisa said, hand in there! Complain on this forum. I am lucky that my husband has Gluten issues too and we can talk about it, but it is harder for others in my family to understand. This forum is the best!

[cyclinglady]

Be patient. Take a year or so to get well and you will have that baby! I had mine at 39 so there is still time.

[NoGlutenCooties]

Welcome!

 

(((HUGS)))

 

Just to echo what others have said.  You are NOT crazy.  This thing is REAL.  And if you continue to be 100% gluten free you WILL get better.

And your body doesn't hate you... it hates gluten (and possibly a few other foods).

 

Just curious if you've had your thyroid and your nutrient levels checked?  Celiac can cause issues with both and a sluggish thyroid or significant nutrient deficiencies can cause fatigue and other symptoms too.

[GF Lover]

Hi Shannon and welcome.

 

You should consider going thru with the endoscope and colonoscopy.  And as suggested get your thyroid and nutritional values tested.  At this point you know you can't have gluten and corn.  I would advise against another challenge since the rash showed up.  It could possibly be DH and is a skin form of Celiac and is diagnosed by skin biopsy.  The blood in your stool is most likely from internal hemorrhoids, the colonoscopy would confirm this.  If you still want to pursue a diagnosis you may be able to get it through the rash, that's assuming that the rash is DH and would be done at a Dematologists office.  

 

Read the Newbie101 thread in the Coping Section.  There is a lot of good information for you.

 

Big Hugs, 

 

Colleen

[MsHolland]

Welcome! You are not alone and you are not crazy! You will get better! You just have to learn to be diligent about avoiding gluten or getting cross contaminated.

My husband went gluten-free 13 years ago at the advice of my allergist and his GP . I was diagnosed last year and my only symptom was anemia. I just went in for a routine colonoscopy and the GI doc suspected celiac disease. It was a shock! I am glad so my dx. My husband would be the first to tell you that not having a dx has been much harder in terms of support. Fortunately, I am the queen of allergies, so eliminating gluten was just one more thing to do. My transition was easier (still grieved) since I had been cooking gluten-free for 13 years.

It has taken me a year to get better. This disease requires lots of patience. My anemia has resolved, I am trying to build bone as I had a vertebrae fracture last June doing nothing! I do have lots of food intolerances and allergies that have improved, but they have not gone away yet. Now, I am diabetic and that is even worse since I used to bake the most delicious gluten-free desserts! I do get intestinal issues if I am accidentally glutened. I try hard not to eat outside the house. I travel, but I pack my own food.

Like Lisa said, hand in there! Complain on this forum. I am lucky that my husband has Gluten issues too and we can talk about it, but it is harder for others in my family to understand. This forum is the best!

Thank you! I feel better already talking to you guys

 

I've pretty much come to the realization that I can't eat out anymore either: 1) I'm super sensitive to CC, 2) Servers are rarely very educated, 3) This gluten-free/Paleo trend is making things harder because of miseducation, and 4) the traditional gluten grains (wheat, barley, rye, and oats) are not my only triggers.

 

I haven't tested sorghum on it's own yet, but I'm pretty sure that all prolamine containing grains make me react, especially corn--which is wicked and almost worse than gluten, especially since it's in EVERYTHING! Dextrose, High Fructose Corn Syrup, maltodextrin...it's everywhere! I'm supposed to be going out for a friend's birthday this weekend and she chose a Japanese steakhouse. To my friends, the menu seems gluten-free: rice, vegetables, lean meats, etc. Well, it's not. There's the fact that everything is cooked on the same griddle, the sauces probably all undoubtedly contain wheat, and I called the restaurant to see what kind of cooking oil they use: vegetable, which is just another word for corn (possibly soy, which I still stay away from).

 

I've told my friends not to worry about planning around me, that I'll just order a glass of wine I love them, and they love me, but they just don't understand, even my (less sensitive) gluten intolerant friend. Maybe it's me projecting my own insecurities and confusion, but I get the feeling that they think this gluten-free thing of mine is simply me getting caught up in the newest health "trend," or that I've become a hypochondriac.  

 

Like you said, I definitely wonder if a diagnosis would help with some "validation," in that regard. I have no doubt that something is wrong with me, and my family is very supportive, they just don't understand the severity. Plus, I'd like some answers. 

[MsHolland]

Welcome!

 

(((HUGS)))

 

Just to echo what others have said.  You are NOT crazy.  This thing is REAL.  And if you continue to be 100% gluten free you WILL get better.

And your body doesn't hate you... it hates gluten (and possibly a few other foods).

 

Just curious if you've had your thyroid and your nutrient levels checked?  Celiac can cause issues with both and a sluggish thyroid or significant nutrient deficiencies can cause fatigue and other symptoms too.

Hugs!!! And thank you! 

 

I definitely think I have some malabsorption issues (folate deficiency, weird rashes, fatigue, weakness, etc.). But the last time I had my levels checked was in June '13, exactly one month after initially going gluten-free (again, that was a mistake because it wasn't under a doctor's supervision). I was in to have my hormone levels checked (they were normal) and not for gluten issues. My TSH was 1.6 (0.4-4.7 uIU/mL). And these were my nutrient levels on the gluten-free diet:

 

Na 135-145 mmol/L    141  

K 3.6-5.3 mmol/L    3.7  

Cl 98-109 mmol/L    106  

CO2 21-28 mmol/L    22  

Anion gap w/o K 7-15    13  

BUN 8-24 mg/dL    11  

Creatinine 0.6-1.2 mg/dL    0.80  

GFR non African Amer >59 mL/min    85  

GFR African American >59 mL/min    103  

Glucose 65-120 mg/dL    96  

Calcium 8.5-10.5 mg/dL    9.4

[1desperateladysaved]

Welcome Shannon,

 

So, sorry you've been bumping along so roughly, but I am feeling excited, because I believe you are on the right track.  I have a similar story in several ways.  I got into natural foods, so glad now that I can cook from scratch.  My husband got tired of hearing about my being tired.  Now, after 2 years; his ears are ready to hear!  I have been being super-sensitive and am better off eating my own food all of the time.  He can now see the symptoms that use to be "In my head."  The forum is good because one realizes there are people that have been through very similar circumstances. 

 

You certainly have a positive test to the diet making a difference.

 

I know you are feeling overwhelmed and tired.  So did I, but I feel better now.  I am hoping to hear you tell a similar story in the future!

 

D

[NoGlutenCooties]

I'm no expert, but your blood work looks pretty good as far as nutrients go - you are a little on the low side for K and Calcium.  You may want to consider digestive enzymes and a good multi-vitamin at least for awhile - while your body is healing.  B Vitamins are also good for energy and a host of other things - a good B Complex may help you.  The good thing about them is that they're inexpensive and any "extra" gets shuffled out with your pee - so it's not like you can overdose on them.

[dilettantesteph]

Your story sounds familiar.  It can be hard at first.  It should get better.  Try to take things one step at a time.  That makes it a bit easier.

[MsHolland]

Hi Shannon and welcome.

 

You should consider going thru with the endoscope and colonoscopy.  And as suggested get your thyroid and nutritional values tested.  At this point you know you can't have gluten and corn.  I would advise against another challenge since the rash showed up.  It could possibly be DH and is a skin form of Celiac and is diagnosed by skin biopsy.  The blood in your stool is most likely from internal hemorrhoids, the colonoscopy would confirm this.  If you still want to pursue a diagnosis you may be able to get it through the rash, that's assuming that the rash is DH and would be done at a Dematologists office.  

 

Read the Newbie101 thread in the Coping Section.  There is a lot of good information for you.

 

Big Hugs, 

 

Colleen

 

 

Big hugs, Colleen!

 

The problem is I don't think my rash is DH. I think it's petechiae (or ITP, or Henoch Schonlein Purpura). It doesn't itch, it's symmetrical, it's smooth/flat to the touch, and it doesn't blanch when I press on it. But there are definitely pinprick sized pools of blood all over my thighs, part of my hips, and my lower legs. 

 

I do get a rash on my scalp though; sort of behind my ears, but those bumps only itch mildly. The biggest bumps do get sore and painful though. And I also get mild breakouts on my forehead when I've been glutened. The cystic acne occurs on my chin area and goes away entirely when I avoid both dairy and gluten.

 

And I have had small blister like bumps on my fingers that itch pretty bad and have only shown up under the influence of gluten But it's never been anything as severe as the DH photos I've seen around the web. 

 

Welcome Shannon,

 

So, sorry you've been bumping along so roughly, but I am feeling excited, because I believe you are on the right track.  I have a similar story in several ways.  I got into natural foods, so glad now that I can cook from scratch.  My husband got tired of hearing about my being tired.  Now, after 2 years; his ears are ready to hear!  I have been being super-sensitive and am better off eating my own food all of the time.  He can now see the symptoms that use to be "In my head."  The forum is good because one realizes there are people that have been through very similar circumstances. 

 

You certainly have a positive test to the diet making a difference.

 

I know you are feeling overwhelmed and tired.  So did I, but I feel better now.  I am hoping to hear you tell a similar story in the future!

 

D

 

Hi, D!

 

I hope I'm on the right track too! And yes, thank the Lord for whole, natural foods! I subsist on them.

 

My husband is a pharmacist, so I think he feels exceptionally helpless because there's basically nothing he can do to help me other than being supportive, patient, and willing to listen (all of which he does amazingly). But he is human, and he does deal with sick people all day every day.

 

When I told him that I joined this forum he was soooo excited It's so great to hear from people like you who've dealt with all of this and gotten better!

 

I'm no expert, but your blood work looks pretty good as far as nutrients go - you are a little on the low side for K and Calcium.  You may want to consider digestive enzymes and a good multi-vitamin at least for awhile - while your body is healing.  B Vitamins are also good for energy and a host of other things - a good B Complex may help you.  The good thing about them is that they're inexpensive and any "extra" gets shuffled out with your pee - so it's not like you can overdose on them.

 

Thanks, NGC!

 

I definitely think that I have an electrolyte issue. I drink so much water and I swear it goes right through me. I always have to have a water bottle next to me--so much so that it's become a running joke in my family. I get so dehydrated though. It's awful! It's like I'm always swinging from retaining water and being super dehydrated. Not fun.

 

Your B Complex comment made me laugh. I took one for a while this past summer and had to stop because I was literally sitting up at night wide awake like a crazy woman

 

I'm thinking I'll go see the GI, talk with them about the colonoscopy/endoscopy, and about my nutrient levels. I'm either going to have to do that and reintroduce gluten for a while :'( or think about getting gene testing done. But I've heard that's expensive. I do have insurance though. But the lab that did my blood work did recommend that I do the HLA DQ2 and DQ8 typing.

 

Either way, I would like to know what's wrong with me because it's clearly serious, and it's making me miserable :/ 

[GFinDC]

Hi Msholland,

 

It seems you are in a bit of a pickle.  You already know that gluten and dairy both make you sick.  And now when you eat gluten a new symptom has appeared, a skin rash that itches. Well, it itches on your fingers anyway. even if it doesn't itch elsewhere.  It is a symetrical rash though, and that aspect matches dermatitis herpetiformis (DH).  For "some reason" the IgA antibodies IN DH cause itching.  The symetrical aspect of your rash seems important to consider.

 

You have experienced a progression of symptoms as far as the rash goes.  It is getting worse (per your description) every time you eat more gluten.  It started out not too bothersome but now it is getting bad.

 

It might help to check with some of the DH section peeps who have experience with DH.  It seems tome that DH peeps sometiems don't "pass" the standard gut antibodie test but still have celiac disease.  The antibodies concentrate their attack on the skin first, instead of the gut with them.  Eventually that changes after time with continued gluten exposure and they have gut symptoms too.  At least that's my understanding.  But at the beginning they have trouble passing the standard gut related testing.  That 's why the skin biopsy is an important test for DH.

 

That seems to the same situation with people who have gluten ataxia as a primary symptom.  They have symptoms from antibodies attacking the brain before they get gut related symptoms later on.  It's progression of symptoms, sometimes starting in the gut, but sometimes starting other places in the body.

 

Anyway, I think you should carefully consider whether or not it is worthwhile to you to get a formal diagnosis via gut or blood testing.  Some forum members have reporteed developing DH during a gluten trial and it taking months to recover from the rash that resulted.  And these were sometimes people who didn't have DH symptoms before.

 

So, is it worth it to you to take that risk?  You are looking at possibly months of extremely itchy rashes, and also reducing your iodine intake in order to recover.  It could take more than months to recover in fact.  Sometimes people deal with the rashes for a year or more.  It's not fun from what I've read.

 

Celiac diseae testing is not perfect at this point.  There are a lot of improvements that it would be nice to have in place.  But they aren't here right now, and it may be years before improved, definitive testing is available for all aspects of gluten problems.  Plus many doctors don't understand proper testing procedures for celiac anyway.

 

If you can find a local celiac disease support group they might be able to suggest a good dr.  There is also a doctors forum on this site that has suggestions for doctors in some areas.  I suggest you also check into the DH section of the forum for firsthand info regarding DH.  I don't have it msyself (thank God) but some other members do and can offer great advice.  I hope you tread carefuly with gluten challenges, because once DH gets established it can get very bad fast, and it doesn't go away easily.