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I Guess I Am Joining The Undiagnosed Club


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12 replies to this topic

#1 maggiesimpson

 
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Posted 22 October 2012 - 12:58 PM

After a downward spiral with my health in the last year, I have finally finished going through testing. I have had bloodwork that came back normal, my mistake for not knowing to ask for a full celiac panel which may or may not have given me an answer. The colon/endoscopy biopsies were negative for celiac. They did show chronic inflammation and ulcers in the ileum. Then, I took the pillcam. Apthous ulcers throughout the small intestines. I had gotten the results and posted here a few weeks ago because I was nervous about what they meant. Anyway, I finally had my follow-up appointment. I really expected to hear "we're going to run more tests." Wrong. They decided it was time to start treatment.

So, I guess I caught the damage "too early". I put that in quotes because I think it is ridiculous that the medical professionals have a hard time diagnosing these diseases unless the damage is prominent enough. That's how I feel about it anyway. They admitted to not knowing for sure what it was. They just said it's suspicious, and they want to treat it like crohn's. Which is a bit confusing because they said that right after saying "crohn's doesn't present like this, it's rare but not impossible." What? Are you kidding me? You don't think it looks like crohn's, but you're going to treat it like it is. What about celiac?

They have not once said that I do not have celiac. I think they don't want to say that in case they might be wrong. Kinda funny that my misery is related to when I eat gluten. I also find it funny that they are choosing the treatment option that requires expensive medicine and not the one that is strictly dietary.

Personally, I think they are wrong. Then again, I am not a doctor. I don't really want to take the meds, but I am afraid that if it is crohn's I don't want it to get worse. I am gluten free right now, and it's going well except for the beginning slip-ups that I know are just a part of the adjustment. I know it's possible that I don't have celiac, and I could just be intolerant. It just seems like everything in my life is pointing to it. It's not worth going through the misery to get the diagnoses, but I really wish I had one. I wanted to let my siblings know what to watch for and what they are at risk for. I had to tell them about celiac and crohn's and that I don't know which it is. All I know is they are the two that the GI doc was looking at.

Well, I just really needed to vent a little. Thanks for reading.
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Megan
Diagnosed with Hashimoto's in 2003
Total thyroidectomy in 2003
Diagnosed gluten intolerant with the help of a holistic nutritionist in 2012

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#2 GottaSki

 
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Posted 22 October 2012 - 01:32 PM

That is very frustrating Megan.

You may find clarification with more time gluten free. If your symptoms continue to improve with the strict removal of gluten and return with the inevitable accidental glutening - you have your answer. Positive dietary response combined with the inflammation and ulcers of the small intestine would indicate Celiac Disease regardless of blood test results. I'm curious - did you have inflammation of the large intestine as well?

It makes sense that you would question such an unclear diagnosis. Is it possible to have another GI - maybe one that specializes in Celiac - review the tests and diagnosis?

I wish you speedy healing and hope you'll find answers to your remaining questions.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#3 ravenwoodglass

 
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Posted 22 October 2012 - 01:45 PM

Have you talked to your doctor about waiting on the Chrons meds and keeping strictly to the gluten-free diet for a couple months and then rescoping to see if the ulcers etc have resolved? Since you have had positive changes with the diet and become ill when accidentally injesting gluten you may want to consider that route.
By the way IMHO the word 'just' should never go in front of gluten intolerant. Some doctors would consider me 'just' gluten intolerant because I had false negative blood work. My sig shows what that did to me.
  • 1
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 maggiesimpson

 
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Posted 22 October 2012 - 11:50 PM

Thanks for the supportive words. The inflammation is only in the small intestine, nothing in the colon. I think I'll check some of the dr. profiles on the clinics website and see if maybe I should make a switch if my doc doesn't work much with celiac.
  • 0
Megan
Diagnosed with Hashimoto's in 2003
Total thyroidectomy in 2003
Diagnosed gluten intolerant with the help of a holistic nutritionist in 2012

#5 maggiesimpson

 
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Posted 23 October 2012 - 12:00 AM

Good point on using the word just in front of gluten intolerant. I should stop using it because it makes it sound to other people like I'm just sort of unable to ingest it. They might take that as not being a big deal, and I could find myself getting glutened or constantly trying to explain myself.
I have a bad habit of chickening out when it comes to "challenging" doctor's orders - as many of them would see it. If I can get myself to make the phone call I will ask about tapering off the crohn's meds and trying 6 months of strict gluten free first.
  • 0
Megan
Diagnosed with Hashimoto's in 2003
Total thyroidectomy in 2003
Diagnosed gluten intolerant with the help of a holistic nutritionist in 2012

#6 1desperateladysaved

 
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Posted 23 October 2012 - 02:52 AM

Megan,

I was hoping you diagnosis would be clear. I am glad though that you can be gluten free and move on. I hope you can atleast wait on the drugs and try the diet first. I am pretty sure the diet calmed inflammation in my system. Get well to you.

Diana
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#7 frieze

 
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Posted 23 October 2012 - 04:55 AM

I am thinking your cynisicm is well placed. Last I knew Crohn's was a disease of the LARGE intestine. Good luck.
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#8 cavernio

 
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Posted 23 October 2012 - 06:47 AM

Every description and picture that I've read/seen about celiac disease is that ulcers aren't what celiac disease looks like. On the other hand, crohn's disease does have ulcers. Weird it's only in the small intestine, but as the doctors said, not impossible.
Another thing, since you do have ulcers in your small intestine, (a break in your intestine's barrier) it seems to me that you wouldn't be one of those people who would have a negative blood test due to the antibodies staying only in your intestine where they're produced. So the 'too early' idea that you have in regards to celiac disease seems less likely. It is of course still possible that you just run low in those antibodies in general, so they'd never be detected. If you were to go and get more tests, I would ask for that one.

If not eating gluten makes you feel better, that's all you really need to not eat gluten. And you should still be aware that gluten intolerance is still a very real, unfortunately hardly understood, health problem.

If you want to get better as fast as possible, take your crohn's meds and be gluten free. If you want more of a definitive, clear diagnoses, or at the least more of a clear-cut sypmtom cause, then only do 1 of those things for right now.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#9 GFinDC

 
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Posted 23 October 2012 - 03:09 PM

According to the all knowing wiki, apthous ulcers can happen in both Crohns and celiac. So they are not only found in Crohn's patients.

http://en.wikipedia..../Aphthous_ulcer
The exact cause of many aphthous ulcers is unknown but citrus fruits (e.g., oranges and lemons), physical trauma, emotional (more than physical) stress,[9] lack of sleep, sudden weight loss, food allergies, immune system reactions,[10] and deficiencies in vitamin B12, iron, and folic acid[11] may contribute to their development. Nicorandil and certain types of chemotherapy are also linked to aphthous ulcers.[12] One recent study showed a strong correlation with allergies to cow's milk.[13] Aphthous ulcers are a major manifestation of Behçet disease,[14] and are also common in people with Crohn's disease.[15]

Trauma to the mouth is the most common trigger.[16][17][18] Physical trauma, such as that caused by toothbrush abrasions, laceration with sharp or abrasive foods (such as toast or potato chips/crisps), accidental biting (particularly common with sharp canine teeth), after losing teeth, or dental braces can cause aphthous ulcers by breaking the mucous membrane. Other factors, such as chemical irritants or thermal injury, may also lead to the development of ulcers. Using a toothpaste without sodium lauryl sulfate (SLS) may reduce the frequency of aphthous ulcers.[19][20][21][22] One smaller study found no connection between SLS in toothpaste and aphthous ulcers.[23] While a more recent study (from 2012) concluded that SLS-free did not reduce the number of ulcers and episodes, but it did affect the ulcer-healing process and reduces pain in daily lives in patients with recurrent aphthous stomatitis.[24] Celiac disease has been suggested as a cause of aphthous ulcers[25][26] and some patients benefited from eliminating gluten from their diets.[25]

There is no indication that aphthous ulcers are related to menstruation, pregnancy, or menopause.[27] Smokers appear to be affected less often.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#10 maggiesimpson

 
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Posted 23 October 2012 - 05:48 PM

Hi, Diana.

I was hoping you'd see my post. I've been meaning to follow up with you. I'm frustrated, but I guess it's just time to focus on healing. I wish I had an answer, so I could tell my family what to watch out for since they're at an increased risk. They now know to watch for either celiac or crohn's because they have a chance of having either.

How have you been. I hope you haven't had any more glutenings. Those are awful. I got hit a couple days ago and still have an upset stomach and huge bloating. Live and learn, right?

-megan
  • 0
Megan
Diagnosed with Hashimoto's in 2003
Total thyroidectomy in 2003
Diagnosed gluten intolerant with the help of a holistic nutritionist in 2012

#11 maggiesimpson

 
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Posted 23 October 2012 - 06:19 PM

I just remembered. At my last visit they ran one more blood test. Nobody told me what they were checking or how it related to anything. They checked my ESR which came back as 9, with <20 being normal. I assume this is saying I have no inflammatory markers or something. I don't really understand how this relates to crohn's or other diseases. Maybe someone can shed some light on this for me. What I'm seeing is that crohn's usually shows higher-than-normal ESR.
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Megan
Diagnosed with Hashimoto's in 2003
Total thyroidectomy in 2003
Diagnosed gluten intolerant with the help of a holistic nutritionist in 2012

#12 mommida

 
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Posted 23 October 2012 - 07:09 PM

Do you have a hard copy of the pathology report from the biopsies?

I do know of something that "fits" for the description here.Eosinphilic gastroentestinal disorder. Gluten can "trigger" the immune system to attack with white blood cells (eosinophils). The eosinophils are usually reserved for fighting a parasitic infection and have a spear like shaft. The eosinophils damage normal healthy tissue with a higher concentration in an area of the GI track. So this one illness has a connection to gluten and damage in the GI track (even specifically the colon).

The medical community is now making connections between eosinophilic disorders and Celiac.

If the screening was not ordered to be done, you were not "tested" for EGID. Give the doctor a call it is one last chance for a diagnoses before going gluten free. By the way, if gluten free makes you feel better, just do it. Welcome to the club!
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Michigan

#13 Googles

 
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Posted 23 October 2012 - 07:52 PM

This wont help with the clarity of diagnosis, but Crohn's can happen anywhere along the digestive system not only in the large intestine. Just a FYI. My brother has it and they tested me for it to make sure I didn't have it when I got diagnosed.
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