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jenvan

Fevers, Exhaustion, Headaches...

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Hey all... So I have been feeling pretty bad off and on for a while now. Just when I had seemed to finally be getting better. So so discouraging... :unsure: I keep having these reoccuring symptoms. Of course my doc has no good ideas...his best one was Hep C (after asking me if I did intravenous drugs!), which of course came back negative. My thyroid, iron, ana--lupus etc type tests have all been negative or normal. It seems like every week or few weeks I get run down feeling...this will usually last for several days. I get a feeling of exhaustion, where is it sometimes hard to make it through the day and function. I get a low-grade fever sometimes too, a headache. Sometimes I get an accompaning feeling of disorientation--like I'm having an out-of-body experience. I feel pretty damn miserable. My psoriasis has also gotten much worse that past few months as I've started to feel bad again. Funny how all these things are linked... I am waiting on results for a recent Celiac panel from my regular GI checkup. I realize CC is always an issue for us, but I mostly eat fresh whole type foods and hardly ever eat out. I eat cereal, lundberg chips and a few packaged snacks/condiments from time to time.

Does anyone have any ideas what this could be? I've thought about so many different things--liver disease, thyroid, mono, etc etc. I would appreciate any thoughts. Thanks friends...


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Jen,

I'm sorry that you're still feeling bad :(

I know how diligent you are with the diet, and your health in general. I wish I had a suggestion for you, but you seem to have the bases covered, test wise.

I was getting a lot of the same symptoms (especially the fatigue-it was unrelenting)--long after I was gluten-free. There were so many days that I swore I was not getting much better, and wondered if this was it--as healed as I was gonna get. (This, of course, only made me more depressed) I took another good look at what I was eating every day, and ended up doing an elimination diet. I ended up having to cut out basically all processed foods, and juices. I was trying to hang on to a couple of my favorites, but after I gave up and cut them out, I did improve.

Another thing that helped me a lot was switching to spring water from the filtered water I had been drinking. Really, it was an amazing change.

One thing I've learned this past year is that almost anything can become an intolerance after going gluten-free. Not for everyone, obviously, but certainly for a number of us.

Good luck, my friend--keep us posted on how you're doing! :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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This is what I've been experiencing, too. Everything comes out fine on tests, yet I can hardly get out of bed some days, and don't others.

I found a doc here in Cincy, I don't know one like her in Indy, but it's about a 2 hour drive for you if you'd like to see her. Anyway, she was tired of this very thing happening, people would come in sick, and conventional medicine would say they're healthy. So she branched off into alternative medicine, yet practices conventional as well. She even has an acupuncturist on staff.

Her theory is that it's adrenal fatigue. I started a thread on my visit with her called, update, saw doctor. There are a couple links to websites that you might find help. One doc said that virtually every person that he's worked with with gluten intolerance has also had adrenal fatigue. Patti, the interesting thing is, part of the cure for it is to cut back to a very basic diet!

Doc said that it takes time to heal, and just as our illness came on cyclically, our healing will as well to not get discouraged when it hits a low, that just means you've made progress by completing another cycle.

I think you will see a lot of your symptoms when you research adrenal fatigue/exhaustion. I know I did!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Carla--Interesting on the basic diet being good for the adrenals. I had such a turnaround after I did this. It didn't happen right away--it was little by little until one day recently I realized that I wasn't so tired and my stomach was much better. This fits into what your doctor said.

I'm going to do some reading on the subject, check out your links :)

Hopefully this discussion will help Jen, too.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Basically, the theory is that the body has been under so much stress, constantly producing cortisol, that eventually the adrenals fatigue and can't keep producing the needed cortisol. It causes all the symptoms we describe all the way down to the IBS, fatigue, brain-fog, disorientedness, hypoglycemia, low blood pressure, low thyroid, autoimmune disease, etc. So, the solution is to remove the stress, and give the body the nutrients it needs. So, for diet, it's a very basic one with no processed food, no sugar, no alcohol, no caffeine or coffee, etc. Also, lots of rest, remove as much stress as possible, and exercise should only be of the kind that promotes relaxation.

So, the real question is, which came first, the gluten intolerance or the adrenal fatigue???? Adrenal fatigue can cause autoimmune disease, but the constant inflammation of gluten intolerance can cause adrenal fatigue.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Jen,

I would love to say I have some suggestions for you. I am sorry you are feeling bad. I have sort of been going through the same thing. My digestion has been better the past month then it has since going gluten free. So that is a HUGE relief, but I am still very exhausted alot. My bones ache. Especially my hips, knees and legs. I too will run a fever of 100 alot when I feel this way. It is strange for sure.

I don't get headaches. Is there any reason you are stressed, etc. I know it can be a vicious cycle. You feel bad, so you are down or vice versa. For me it actually feeling bad that gets me down. I can't stand it though, because I will feel great and then I will feel really fatigued for a few days at a time.

I do drink too much caffeine I think and then I don't sleep well alot of the time. I need to cut back on that and I might feel better. I also haven't exercised in three months, because I haven't had anyone to watch my kids.

Hope you feel better. Keep us updated.

Monica

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I'm sorry you're feeling so poorly. I don't have any great suggestions. What comes to mind to check out:

* allergies (they don't always give you a runny nose and itchy eyes)

* other food intolerances (I know, I know... ugh!)

* migraine (you mention headaches, so I thought I'd throw out the atypical migraine presentation possibility)

* nutritional deficiency (you were already tested for these?)

* chronic, low-grade infection that you're body isn't clearing (but it looks like you may have been tested for these?)


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Guest cassidy

Have you been tested for parasites and candida? I realize you didn't site any intestinal symptoms but I was very tired, my skin was horrible and I just didn't feel right. Turns out I had no good bacteria in my intestines, a bad bacteria and amoeba and candida overgrowth. I really wasn't having intestinal symptoms - that cleared up after going gluten-free. My doctor said the antacids and antibiotics I had been on in the past got me in this situation. They did a three day stool test to find this out.

It might be worth a try.

It is so frustrating to be sick and the doctors can't figure out what is wrong. I hope you figure it out soon.

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Thanks for all the input friends...not sure if I'll make it through all this day at work. Hate this. Ya'll know what I mean... Part of me wants to make sure this isn't just celiac disease related--that I'm not just needing more time to healing and to make sure I'm not missing something. But the other part of me hates to keep searching, keep pursuing. I'm sure some think I'm acting like a hypochondriac...but you guys know what I mean.

I will look into the adrenal fatigue. I have wondered about that in the past. Carla--so you are just working with this Cincy doc now? I'm under the impression some doctors don't put much stock in adrenal fatigue...have you found that ?

Patti-I have been thinking about streamlining the diet yet again...just in case there is another food issue. Cutting back to no processed foods. Called doc, still don't have my celiac disease panel results back. Jeez.

Cassidy-I had parasites ck into, but it was a while ago. I'll think about candida again...

Tiffany-The migranes is an interesting thought. I do get "headaches" very often. I had deficiencies cked in the early stages of the diet, but will have to ck if they did anything besides iron and b12. What others would you suggest? Infections--had mono test a while back, but that was it. Sometimes I feel like I must be allergic to myself :) Had allergy testing done earlier this year...they results apparently said all my allergies were gone--I had no "allergies." (These were respiratory, environmental type allergies...) Docs couldn't give me a reason then for my runny nose, sneezing, "allergies." Its like my histamines are on autopilot.

Thanks again all...any more thoughts, let me know. Doing a lot of thinking on this...


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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I will look into the adrenal fatigue. I have wondered about that in the past. Carla--so you are just working with this Cincy doc now? I'm under the impression some doctors don't put much stock in adrenal fatigue...have you found that ?

Yes. I don't think docs take it seriously. This doc branched out into less conventional health care, so she's much more open to alternatives, but still uses conventional when needed. It's a nice balance and I was blessed to find her!! This is one of the good articles I've found on this, I just reread it this morning. There is a lot of other good info out there, too. http://www.womenlivingnaturally.com/articlepage.php?id=6

One doc said literally all of the 7000 patients he has had that have had gluten intolerance have also had adrenal fatigue.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Tiffany-The migranes is an interesting thought. I do get "headaches" very often. I had deficiencies cked in the early stages of the diet, but will have to ck if they did anything besides iron and b12. What others would you suggest? Infections--had mono test a while back, but that was it. Sometimes I feel like I must be allergic to myself :) Had allergy testing done earlier this year...they results apparently said all my allergies were gone--I had no "allergies." (These were respiratory, environmental type allergies...) Docs couldn't give me a reason then for my runny nose, sneezing, "allergies." Its like my histamines are on autopilot.

If you get "headaches" often, definitely be evaluated for migraines. They are more common than people think, and can definitely cause the sort of problems you're describing. (Took last winter away from me. :( ) They don't always follow the same pattern, and many people do not get an aura with their migraines, no to mention a person's migraine pattern can change over time. If OTC meds do little for your headaches, they are likely migraines, but it's good to evaluate the alternatives, like chronic sub-clinical sinus infections. (They do an MRI to rule out the difference between the two.)

Was it scratch testing you had done earlier? Even if those came back all negative (outside of the control, I presume), you can still have allergy symptoms from things they didn't test. My allergist kept me on antihistamines, even after my allergy tests came back negative for the vast majority of things (I think I was allergic to olive (trees, not the fruit) and mesquite! whatever...), because I was having symptoms. There are times when treating the symptoms is a good thing, and if it allows you to have an improved quality of life, it may be worth it. Do antihistamines or other allergy medications (gah... can't think of the name... originally an asthma med, but they did cross over into allergies... a little pink pill... works for about 1/3 of people... I took it for about a year and a half... someone here will know it) have any effect on your symptoms?

As for infections and nutritional deficiencies... It sounds like they really haven't been very thorough in testing... I'm not 100% sure what else to suggest, though perhaps they were going by the results of testing your immune system and seeing that it isn't trying to fight anything off so you must not have an infection. Have you seen an infectious disease specialist? I got a referral to one when dealing with the worst of my vulvar vestibulitis and I kept getting yeast infections. Such a specialist might be worth a shot...


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Sorry I don't have any other suggestions beyond what's come up, but just wanted to say that I'm sorry you're going through this and I hope you figure it out. I just said a little prayer for you.


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

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Tiffany-

Did your family doc or neurologist evaluate you for migraines? I did have a sinus MRI earlier this year after the allergy tests came back negative. It was fine. I did have scratch testing done. When I was younger the scratch tests showed allergies to a host of things. This time they were all negative. Meds do help some with the “non-allergies” as I call them :rolleyes: I take clarinex or an herbal sinus supplement, depending on my symptoms. I haven’t seen an ID specialist, but that might be my next step. I have an appt with my hematologist next week…she is one of my more attentive and caring doctors—the one who thought to test me for Celiac. I will lay it on the line with her and ask her about some of these things.

Liz-

Thanks for the prayers friend :)


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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I have an atypical presentation of migraines, because I have abdominal migraines (headache in my stomach :rolleyes: ) with all of the loverly side effects like nausea and vomiting and an aura. I figured that out and my GI agreed with me....

At any rate, I'd say migraines for you too since they've ruled out everything else. I'd find a neuro for that though, because if you are having migraines, you're showing a non-typical presentation.

Other than that, the sinus thing could be that you have an infection or irritation in one of your other mucus membranes so you're overproducing mucus. I had that problem while I was on the gluten challenge, constantly runny nose and slime everywhere else.

I hope you get to feeling better! :)


Alright, don't worry even if things end up a bit too heavy

We'll all float on, alright

Well we'll float on good news is on the way...

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Oh my god, you could be me. I was going to post a similar post! I to have had chronic low grade fevers that come and go, exhaustion, and feeling what I call the yuckies. This came on suddenly for 2 months before going gluten free. It only happens occasionally now. But, a month ago my fibro came back, and now I woke up today with that old crappy feverish feeling. It always feels the same. I just started seeing an accupuncturist, who took my whole 7 page history. With my history of getting better and worse and list of ailments, he feels I have some ongoing infection that keeps resurfacing. I also feel candida may be and issue. Anyway he feels he can help. It will probably take several months to battle this he said. Wish me luck!

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Oh my god, you could be me. I was going to post a similar post! I to have had chronic low grade fevers that come and go, exhaustion, and feeling what I call the yuckies. This came on suddenly for 2 months before going gluten free. It only happens occasionally now. But, a month ago my fibro came back, and now I woke up today with that old crappy feverish feeling. It always feels the same. I just started seeing an accupuncturist, who took my whole 7 page history. With my history of getting better and worse and list of ailments, he feels I have some ongoing infection that keeps resurfacing. I also feel candida may be and issue. Anyway he feels he can help. It will probably take several months to battle this he said. Wish me luck!

I do wish you luck! Let me know what happens as you work with him... It "feels" like an ongoing infection sometimes. I just hope someday I'll finally break through this. Couldn't work and have a family feeling like this...

Chel-Ugh sinuses. Annoying. I have taken to doing sinus rinses. Did we talk about that once? Anywho...once I start to get stuffy, I do one...seems to help clear things out. Just feels like my whole body is on heightened alert. Maybe for a reason...that's what I hope I find out.


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Well, my idea can't explain the fevers, but....

I had a lot of similar symptoms after going gluten free. I went nuts with doctors, so many appointments, trying to figure out what on earth was wrong. Finally after seeing my face so many times my dr. suggested it might be anxiety and that I should try and anti-depressant.

Of course I scoffed....anxiety? How could that be responsible for fatigue, migraines, dizziness, hearing my own heartbeat, nausea, vision problems, sleep issues, muscle aches? How could this be? I felt fine, I didn't feel anxious or stressed out at all; I'm a teacher, it was summer, no stress whatsoever.

I ruled it out and went to another dr. After one visit he suggested the same thing as my other dr!!! I felt like i was going mad. Don't these dr's see these are real physical symptoms?

However, I was at my wits end. I had tested blood sugar, vitamins, thyroid, every friggin blood test you can have. I'd had a colonoscopy, and upper endoscopy, and a dozen food allergy tests. I was sick of tests. I finally tried the anti-depressant.

Embarrasingly enough, every single symptom disappeared. I felt so stupid. It was that easy. I now know I suffer from anxiety but I never thought I did because I didn't feel anxious AT ALL. I just felt SICK.

This is probably not your problem, but if you absolutely can't find another diagnosis, at least consider it.

Hope it helps!!!

Jennifer:)

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Well, my idea can't explain the fevers, but....

I had a lot of similar symptoms after going gluten free. I went nuts with doctors, so many appointments, trying to figure out what on earth was wrong. Finally after seeing my face so many times my dr. suggested it might be anxiety and that I should try and anti-depressant.

Of course I scoffed....anxiety? How could that be responsible for fatigue, migraines, dizziness, hearing my own heartbeat, nausea, vision problems, sleep issues, muscle aches? How could this be? I felt fine, I didn't feel anxious or stressed out at all; I'm a teacher, it was summer, no stress whatsoever.

I ruled it out and went to another dr. After one visit he suggested the same thing as my other dr!!! I felt like i was going mad. Don't these dr's see these are real physical symptoms?

However, I was at my wits end. I had tested blood sugar, vitamins, thyroid, every friggin blood test you can have. I'd had a colonoscopy, and upper endoscopy, and a dozen food allergy tests. I was sick of tests. I finally tried the anti-depressant.

Embarrasingly enough, every single symptom disappeared. I felt so stupid. It was that easy. I now know I suffer from anxiety but I never thought I did because I didn't feel anxious AT ALL. I just felt SICK.

This is probably not your problem, but if you absolutely can't find another diagnosis, at least consider it.

Hope it helps!!!

Jennifer:)

Funny, this goes right along with the stuff I've been reading on adrenals.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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http://www.womenlivingnaturally.com/articlepage.php?id=6

http://www.drkalish.com/info/gluten/article1.htm

Here are two articles. There's a lot of others out there. But, basically, the adrenals handle stress, when they're fatigued, you don't handle stress and become ill. It makes sense that a doc would say anti-anxiety, but there are other ways as well -- changing your lifestyle so the adrenals don't work as hard. When I read you post I thought it made a lot of sense ... although the anti-anxiety does nothing to rectify the situation, it just gets rid of the problems with pharmaceuticals, which is really how most docs think, but it makes sense that they would work.

When you said you were surprised at the symptoms of anxiety, it just made sense in light of what I have been reading about adrenals. My doc told me that I likely suffer adrenal fatigue ... but my tests won't come back for a couple weeks.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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It seems like every week or few weeks I get run down feeling...this will usually last for several days. I get a feeling of exhaustion, where is it sometimes hard to make it through the day and function. I get a low-grade fever sometimes too, a headache. Sometimes I get an accompaning feeling of disorientation--like I'm having an out-of-body experience.

Lyme disease?? Do you have pets? Tick or flea exposure?

Lyme Disease Symptoms List

1. Unexplained fevers, sweats, chills, or flushing

2. Unexplained weight change--loss or gain

3. Fatigue, tiredness, poor stamina

4. Unexplained hair loss

5. Swollen glands: list areas____

6. Sore throat

7. Testicular pain/pelvic pain

8. Unexplained menstrual irregularity

9. Unexplained milk production: breast pain

10.Irritable bladder or bladder dysfunction

11.Sexual dysfunction or loss of libido

12.Upset stomach

13.Change in bowel function-constipation, diarrhea

14.Chest pain or rib soreness

15.Shortness of breath, cough

16.Heart palpitations, pulse skips, heart block

17.Any history of a heart murmur or valve prolapse?

18.Joint pain or swelling: list joints_____________

19.Stiffness of the joints, neck, or back

20.Muscle pain or cramps

21.Twitching of the face or other muscles

22.Headache

23.Neck creeks and cracks, neck stiffness, neck pain

24.Tingling, numbness, burning or stabbing sensations, shooting pains

25.Facial paralysis (Bell's Palsy)

26.Eyes/Vision: double, blurry, increased floaters, light sensitivity

27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity

28.lncreased motion sickness, vertigo, poor balance

29.Lightheadedness, wooziness

30.Tremor

31.Confusion, difficulty in thinking

32.Diffculty with concentration, reading

33.Forgetfuiness, poor short term memory

34.Disorientation: getting lost, going to wrong places

35.Difficulty with speech or writing

36.Mood swings, irritability, depression

37.Disturbed sleep-too much, too little, early awakening

38.Exaggerated symptoms or worse hangover from alcohol

You don't have to have all the symptoms in order to have Lyme. http://flash.Lame Advertisement Go to "flash discussion" or review the links in this link:

Lame Advertisementubb/Forum5/HTML/000569.html


Negative biopsy for celiac 1980

Fibromyalgia 1980

IBS 1980

Interstitial Cystitis 1992

Systemic yeast

Diagnosed w/ Chronic Lyme Disease 2000

Diagnosed w/ Chronic babesia 2000

Tachycardia 2001

Asthma 2005

Have had Lyme and babesia for

about 48 yrs.

Began gluten-free July 19 '06

Native TEXAN living in Missouri

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Thanks for the thoughts friends. Hopefully get my celiac disease panel results back today. I am also going to my hematologist and will present these ideas to her. Thanks!


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Thanks for the thoughts friends. Hopefully get my celiac disease panel results back today. I am also going to my hematologist and will present these ideas to her. Thanks!

You've been in my thoughts a lot lately--good luck with the test results and the hematologist :) Let us know how you do.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Well, my idea can't explain the fevers, but....

I had a lot of similar symptoms after going gluten free. I went nuts with doctors, so many appointments, trying to figure out what on earth was wrong. Finally after seeing my face so many times my dr. suggested it might be anxiety and that I should try and anti-depressant.

Of course I scoffed....anxiety? How could that be responsible for fatigue, migraines, dizziness, hearing my own heartbeat, nausea, vision problems, sleep issues, muscle aches? How could this be? I felt fine, I didn't feel anxious or stressed out at all; I'm a teacher, it was summer, no stress whatsoever.

I ruled it out and went to another dr. After one visit he suggested the same thing as my other dr!!! I felt like i was going mad. Don't these dr's see these are real physical symptoms?

However, I was at my wits end. I had tested blood sugar, vitamins, thyroid, every friggin blood test you can have. I'd had a colonoscopy, and upper endoscopy, and a dozen food allergy tests. I was sick of tests. I finally tried the anti-depressant.

Embarrasingly enough, every single symptom disappeared. I felt so stupid. It was that easy. I now know I suffer from anxiety but I never thought I did because I didn't feel anxious AT ALL. I just felt SICK.

This is probably not your problem, but if you absolutely can't find another diagnosis, at least consider it.

Hope it helps!!!

Jennifer:)

Jennifer--

Oh, and thanks for sharing that information too. Sometimes you never know.... !


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Update if you're tuning in. As I thought, my celiac panel came back fine. So that is always a great thing--but doesn't bring me any closer to answers. I did, thank God, have a good appt with my hematologist. She is caring and takes time to really think through things and ask questions. Running some tests for other antibodies, infections, autoimmune issues, b12. We'll see... I feel somewhat better--been trying to spend of lot of time resting! Thanks all. I'll let you know if we find something interesting or that might help someone else here...


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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